2. The Stigma of Tuberculosis
In addition to the pain, the horrific TB operations and the endless monotony of the sanitarium, tuberculars also suffered from the stigma of contracting TB.
The National Library of Medicine notes: “During the nineteenth and early twentieth centuries, tuberculosis (TB) was the leading cause of death in the United States and one of the most dreaded diseases known to mankind. Until Robert Koch’s discovery of the disease-causing tuberculosis bacteria in 1882, many scientists believed that TB was hereditary and could not be prevented. Doctors offered few effective treatments. A new understanding of TB in the bacteriological era not only brought hopes for a cure but also bred fear of contagion.” (Tuberculosis NLM)
For people who had TB, interstate travel was restricted, employment was sometimes denied, and forced confinement to state hospitals and public sanatoria were allowable measures used to protect the public. “Lungers need not inquire” was a sign that was commonly displayed in the windows of boarding houses and hotels that refused to rent to people who appeared to have TB. Beginning in the 1890s and persisting through the 1930s, having TB became such a disgrace that many infected people chose to keep the disease a secret from everyone, including family. (Dyer 56)
Stories of stigma often began at the moment of diagnosis when the new patients immediately offered a lengthy, defensive and apologetic explanation of how and why they contracted tuberculosis:
Overwork was a primary reason. But one young man who kept regular hours and did not overwork, was asked by his mother “Where did you get it, son?” as though it were a sexually transmitted disease. (Rothman 228-29)
Once they were diagnosed, tuberculars became outcasts and lepers in society.
Patients confirmed the wisdom of hiding the disease…Families and confidants were as secretive as the sick themselves. They told friends that family members were taking a much needed rest or vacation or cited other physical ailments to account for sudden departures. (Rothman 212)
When the public learned TB was an airborne germ, the resulting fear and panic produced many laws against tuberculars.
In addition to their own debility, isolation, and possible death, consumptives had to contend with the anger and prejudice of a phobic society. They were shunned, evicted and refused treatment by doctors and nurses…Consumptives and suspected consumptives alike feared for their jobs…Some town fathers suggested that tuberculars be compelled to wear bells around their necks, as medieval lepers had. These frightening stories made consumptives feel outcast, humiliated and helpless. These factors, along with the knowledge that one was a constant danger to oneself and others could make the alienation extreme. Consumptives were urged to live alone. Massachusetts passed a law stating consumptives must sleep alone unless their companions were also consumptives. Even pets were commonly denied them. They were to curb any desire to give or to receive affection; kissing, and even shaking hands was discouraged…Tuberculosis was added to the list of eugenic defects that could disqualify couples from marrying…As one doctor put it, “Marriage of consumptives is often the deliberate creation of a pest house.” There were mentions of having to obtain physical certificates attesting that family histories did not contain feeblemindedness, tuberculosis, drunkenness, epilepsy and insanity. Still others mentioned the possibility of sterilizing consumptives.” [emphasis mine] (Ott 113-115)
Since one of the characteristic symptoms of TB is the hacking cough, it’s difficult to believe that people who were close to Hester did not guess her illness. For those who were aware of the TB symptoms, this could be one of the reasons REH and his father had difficulty hiring women to care for Hester and do the housework.
Woman after woman we hired and they quit, either worn out by their work, or unwilling to do it, [emphasis mine] though my father and I did most of it. (Roehm REH Letters 3-460)
While the public feared being infected by tuberculosis, the tuberculars who were shunned and outcasts feared “local, state and federal laws put into place to further isolate them. The spread of tuberculosis concerned everyone. “By 1930, 90,000 people a year still died from the disease in the United States.” (Ryan 28)
The legal rights of both the public and the tuberculars were debated.
How far the government could go to carry legal measures designed to control tuberculosis and not infringe upon the natural rights of American citizenship was the question for public officials trying to control the spread of the disease…Over the first decade of the twentieth century the campaign to educate the public gained momentum and as its message spread throughout the country, so did the fear of associating with persons who had contracted tuberculosis. (Rothman 190)
Fear won and many of the laws brought on further discrimination. When in 1893, tuberculars were required to register with the State of New York, (Rothman 213) Insurance companies gained access to the list and cancelled or refused insurance based on it. (Rothman 188) By 1901 six states had some kind of reporting law.” (Ott 129) And, these brought on even more laws.
By 1908 eighty-four cities required both registration of the tubercular and disinfection of lodgings, procedures that led to discrimination in housing and employment. Landlords refused to rent to the tubercular, insurance companies refused to insure them, [emphasis mine] employers refused to employ them plus there were laws preventing them from working in dairies and bakeries and as school teachers. (Rothman 189) There were also efforts to ban travel by tuberculars and while no state enacted such legislation, fear and hostility did not prevent discrimination by private parties. Boardinghouse and hotel owners turned away the sick and town fathers reimbursed railroads who gave a homeless tubercular a lunch basket and a one-way ticket back home. Western doctors did their part to restrict the flow of travel to the west for those seeking a cure, “When will our professional brethren in the East learn that to send advanced cases to the West with no financial means to enable them to supply themselves with that food and environment that really forms a most important part of climatic treatment, is not only a sin of omission, but one of commission. (Rothman 191)
Another compelling reason for hiding a diagnosis of TB was the fear of mandatory confinement.
Public health officials had recourse to one final weapon in their campaign to control contagion: the power to confine anyone found liable to jeopardize the health of others. The goal was to commit persons with tuberculosis to a special facility until they were no longer a menace to public health. The primary goal was to confine the poor but the legislation extended to include anyone not meeting the standards set by the public health authorities. (Rothman, 191-92)
In his article “The Long Road to Dark Valley,” Howard Scholar Patrice Louinet states:
On 03 January 1906, C. E. “Ted” Thomas died in Phoenix, AZ. He was aged 26 and the cause of his death was tuberculosis. “Ted” Thomas was a son of Christina Thomas, nee Ervin (and sister of Hester Jane), and he had gone west in the hope of getting better, to no avail. The only reason he is mentioned in this article is because out of the dozens and dozens of Ervin ancestors I have tracked down in the course of my research, he is the only one who died from tuberculosis. (Louinet 5)
It’s possible it was the fear of and stigma attached to tuberculars and not the absence of TB that resulted in no other tuberculars being found in the Ervin family. Death records were often changed because many insurance companies voided life insurance policies should the patient die of TB:
On the death certificates, physicians often misstated the cause of death, listing it as pneumonia or chronic bronchitis in order to protect the policy and thereby provide the family with money for a funeral and perhaps pay their own fees. [emphasis mine] (Rothman 188)
In spite of the efforts of many Progressive Americans to address the conditions that caused TB…the public response to tuberculosis remained mired in scapegoating and fear. (Ott 111-12)
Comparable Stigma and Fear in Recent History: AIDS and Ebola
AIDS and Ebola evoked comparable widespread fears in modern times. In the mid- and even late 1980s, “AIDS hysteria” became a familiar term in the media and public life, and its truth was borne out in shocking examples of prejudice. (Thomas)
Time’s “The New Untouchables” wrote:
There are 946,000 children attending New York City schools, and only one of them — an unidentified second-grader enrolled at an undisclosed school — is known to suffer from acquired immunodeficiency syndrome, the dread disease known as AIDS. But the parents of children at P.S. 63 in Queens, one of the city’s 622 elementary schools, were not taking any chances last week. As the school opened its doors for the fall term, 944 of its 1,100 students stayed home.
…[T]he parents of three hemophiliac children — who, though they had “tested positive for AIDS antibodies,” did not have the actual disease — would offer the Senate Labor and Human Resources Committee a chilling personal example of the effects of public ignorance. Louise and Clifford Ray, whose children had been banned from their Florida elementary school before a judge ruled they must be allowed to attend class, told senators that someone had set fire to their house just days after the beginning of the school year, presumably to frighten the family out of town (it worked). (Thomas)
The hysteria during the recent Ebola scare is also well documented. The disease reportedly killed approximately 7,000 people mostly in West African countries of Liberia, Sierra Leone and Guinea. (CDC “Outbreaks Chronology: Ebola Virus Disease”) Within two weeks of the death of Thomas Eric Duncan in Texas on October 8, 2014, the first American death, countries across the world put into effect restrictions for passengers arriving from Ebola areas.