Marissa: Some disability history focuses on disabilities that people are born with: intellectual disabilities like Down’s syndrome, or physical disabilities like spina bifida. Another important proportion of disability history revolves around combat veterans and disabilities like those experienced by amputees or those diagnosed with Post-Traumatic Stress Disorder. As Sarah discussed in her episode on Section 504, disabilities rights activists in the 20th century built coalitions around all disabilities, disregarding categorizations that were unhelpful for their achievement of civil rights. But it can still be useful to explore the causality of disability and how the demographics of disability impact disabled individuals.
Sarah: It’s difficult to know the scale of disability in times past because there are so many factors: maternal nutritional deficiencies (like that in folic acid which can result in neural-tube defects), childhood nutritional deficiencies (like that in vitamin D which causes rickets), accidental injury like losing a hand or anoxic brain injuries from near-drownings, or heritable genetic defects which relies on genetic data we just don’t have about past people. This doesn’t mean we can’t practice pre-modern disability history because, after all, studying the lived experiences of even one disabled person from antiquity or the medieval world is meaningful. But it does mean that it’s difficult for historians to make arguments about sudden and dramatic changes in disabled populations in history. They can sometimes do this when it comes to wars which resulted in the death and maiming of large populations, sometimes called mass-disabling events. This might be why such a large proportion of disability history revolves around combat.
Marissa: But since the advent of epidemiology (the study of infectious disease, its spread and prevention), humanists and scientists have been able to study mass-disabling events related to epidemic disease, especially prior to widespread vaccination. For example, the WHO has estimated that more than 20 million people who would otherwise be disabled are typically-abled today because of the poliomyelitis vaccine. The data from the pre-vaccine era is poor so it’s difficult to make such a precise claim but it’s still possible to look at historical “mass-disabling events” and to explore the ways that such events impacted society as a whole and disabled people specifically. That’s what we’re doing today.
I’m Marissa
And I’m Sarah
Marissa: and we are your historians for this episode of DIG.
Sarah: We are so thankful for all of our Patreon supporters – especially our Auger and Excavator level patrons: Judy, Lisa, Karl, Karen, Jessy, Maria, Denise, Edward, Lauren, Colin, Susan, and Alissa! We can’t thank you enough. Listener, if you enjoy what we do here but aren’t yet a patron of this show, it’s easy: just go to patreon.com/digpodcast to learn more.
Marissa: Just as a heads up, we’ll be using some language, especially in quotations, that aren’t acceptable or even preferred terms to use to talk about disability today. Please know we’re using those terms just contextual accuracy, but we just wanted to let you know to expect some language considered offensive today. Listen with care.
One more announcement– As always, we use the scholarship of others. For this episode, I am especially indebted to Leslie Reagan, Janet Golden, and Gareth Williams among others you can find in the show notes.
Leprosy may have been the first mass-disabling event in the Western World. Typically, the bacteria causing leprosy has a very slow transmission rate; it’s pretty difficult to contract leprosy compared to other infectious diseases. But for a brief time, from 1000 to 1400 CE, leprosy spread like wildfire around Europe; one in every thirty medieval Europeans had leprosy during this time. In this time and place, leprosy was an epidemic. And while leprosy rarely led to death without other mitigating factors, it almost always had a disabling impact on those who contracted it.
Sarah: Leprosy causes extensive nerve damage, muscle weakness, and tissue death. It was common for medieval lepers to develop conditions called “claw hand” and “drop foot” which prevented them from walking, or being able to use their hands in the typical way. Many lepers also dealt with deformities on their face and extremities that limited their abilities to care for themselves. Amputation became a common treatment for affected limbs so many lepers were also amputees. The earliest examples we have of adaptive technology, such as ancient prosthetic feet and canes, were developed in direct response to leprosy’s impact on ancient demographics.
Marissa: We know very little about the lived experiences of disabled “lepers” in the premodern world but we do have some idea of how leprosy-related disability impacted religious communities in medieval Europe. There were many theological arguments that evolved around whether clergy with leprosy could or should carry out their duties. So-called “leper-clerics” were sometimes prevented from saying mass in public because they might provoke horror in their flock and damage “episcopal dignity” through their infirmity. Some were discouraged from celebrating mass even in private once their condition “has gone so far that it has rendered him incapable owing to the wasting away of his limbs.”[1] Keep in mind that saying mass includes physical requirements like elevating the host. Leper-clerics who could not physically perform these acts were NOT accommodated.
Sarah: The historical record documents dozens of investigations into clergy suspected of having leprosy and often, their fates are recorded as well. One Guidonus, an abbot of the monastery of Flavigny, was investigated by the pope after the patrons of the monastery (the King and Queen of France) expressed their alarm at his impairments. Guidonus, they had learned, had lost use of his tongue. We don’t know the fate of this investigation or how Guidonus felt about it all but there are a couple clues from other leprosy inquiries within the church.
Richard Wallingford, Abbot of Saint Alban, was suspected of contracting leprosy in the 1330s so his superior arranged for a commission (of clergy, not of physicians) to investigate his case. Richard was becoming blind in one eye. It’s unclear what his other infirmities were but we can assume that some kind of skin lesions were involved. The commission found that “This abbot, who was gravely tarnished by leprosy, can not speak with other people without scandal or enter in the monastic chapter or the choir of the church with his monk brothers.”[2] The commission suggested that Richard abdicate his office for the good of the monastery.
Richard refused. However, he acknowledged that he needed help in administering the monastery given his condition. He appointed a coadjutor to assist him in his duties, He also, apparently, threatened witnesses in the monastery to keep them quiet about his condition. The pope was aware of these events but he was unable to remove Richard from his office without ostracising him and causing negative attention to the church.
Marissa: The Roman Catholic Church took clerical healthcare seriously. Even leper-clerics who were ousted from their jobs were fed and housed by the church for the rest of their lives. One priest of Saint Solen was granted thirty livres “in order to live conveniently” once he was removed from his vicariate. In other situations, clergy took a page out of Richard’s book and hired an adjutor to help them with their duties. The adjutor and the leper-cleric typically split one income between them. Sometimes clergy fell through the cracks initially, as was the case with a leper friar who was relieved on his duties in 1392. The pope granted him an honorary ecclesiastical office so he could avoid begging on the streets.
Though we know very little about was leprosy meant for individual sufferers, we know more about leprosy’s demographic impact on EUrope. In the mid-12th century France had about 2,000 leprosaria and England/Scotland had 220, all of which served about 1.5 million people with leprosy. Our best estimates puts the number of leprosaria at 19,000 in all of Europe during the worst of the leprosy epidemics. In a society without hospitals, asylums, or detention centers, leprosaria served as the quintessential medieval institution. The visibility and threat of leprosy mobilized a society that had ZERO medical institutions to build 19,000 of them within a century or two. Leprosaria became their own little worlds, with their own churches, cemeteries, and even priests isolated from the outside world.
Sarah: These dedicated institutions fell into disuse as leprosy infection rates declined in the early modern period. In the early modern period, a new epidemic disease was in town and some former leprosaria were even converted into institutions to serve this new scourge: syphilis. We’ve done several episodes about the history of syphilis before so we will try not to repeat any of that information here but the syphilis epidemic in the 18th and 19th centuries is just too profound of a disabling event to ignore. It wasn’t until 1909 that the drug Salvarsan was able to cure syphilis. Penicillin, invented in 1928, did an even better job. But prior to 1909, every single person who contracted syphilis lived with the disease until their deaths. And this was a lot of people, especially in urban areas. In the 1700s, one in five Londoners contracted syphilis before their 35th birthday. An estimated 200,000 Union troops (10%) during the American CIvil War were infected with syphilis but this is likely way undercounted. By the early 20th century, 8% of all Americans were infected with syphilis.
Marissa: The disease remained dormant for a fortunate swath of the population but for many of the infected, syphilis progressed from the initial infection, to a secondary infection, and finally, into tertiary syphilis which was severely disabling and fatal. Tertiary syphilis could damage the heart, becoming cardiovascular syphilis, but more commonly it damaged the brain; this is called neurosyphilis. Ocular syphilis and otosyphilis (eye and ear respectively) are also common progressions. Through any combination of these progressions, “syphilitics” suffered dementia, paralysis, hearing loss, and blindness. To make matters more complicated, we have known since the 1490s that pregnant women infected with the disease may pass it along to their unborn children, now called congenital syphilis. Congenital syphilis often resulted in stillbirth or death shortly after birth. But for babies who survived birth, they commonly had bone deformities, blindness, deafness, anemia, and were prone to meningitis which could cause brain damage.
Sarah: In her 2023 study of Philadelphia’s 18th- and 19th- century medical records, Janet Golden uncovered dozens of stories of Philadelphians disabled by syphilis. One stonecutter sought help when he experienced paralysis 20 years after contracting the disease. A 44-year-old bedridden German immigrant cabinetmaker sought electro-therapy on several occasions. A 36-year-old traveling comedian reported that he had to abandon his career due to leg problems. Now he was not only without a livelihood, he was also on the hook for medical bills. The comedian tried to eek by, seeking care from charity agencies.
One Mr. Wells was the superintendent of mines, a 42-year-old Civil War veteran, and a father of eight. He sought help when he started wasting away, losing 90 lbs in a short amount of time, experiencing neuropathy in his toes and leg weakness that eventually evolved into paralysis. Unfortunately for this veteran, who was himself injured 5 times in the war, he would ultimately be unable to reap the benefits of those who had been “valiantly injured” in the war since his disability could be traced to a highly stigmatized sexually transmitted disease.
Marissa: One patient with the alias Mr. Smith featured heavily in the records. Smith sought help with locomotor ataxia (inability to control bodily movements) and extreme difficulty walking. He developed what he described as a constriction around his waist and decreased dexterity in his hands. He was prescribed potassium iodide and developed severe gastro-intestinal problems as a result. This is a reminder that many of the treatments for Syphilis prior to Salvarsan were, themselves, disabling. The medical records are full of “syphilitics” who suffered from joint pain, hearing and vision loss, dementia, paralysis, and incontinence.
One 1912 report about the causes of blindness in Ohio found that 25 percent of blindness came from syphilis infections (half being acquired syphilis and the other half being congenital syphilis). Cincinnati’s President of the Blind Relief Commission offered charity to 510 blind applicants, stating: “It became necessary to visit fully one-third of these in their homes, and the squalor and poverty disclosed has been a most distressing and sobering revelation. The vast majority have been found entirely without means of support and a burden to their relatives and friends.”[3]
Sarah: While charity existed for disabled people in the 18th, 19th, and early 20th centuries, “syphilitics” were not typically eligible for it based on morality criteria. Even those who weren’t particularly impaired by the disease found themselves marginalized because of the disease’s visibility on the skin. Golden points out that “If most disabled people were second class citizens, people with evident syphilis were third-class citizens– impaired by their infections and disabled because of social and cultural taboos as well as their often-marginal economic status.”[4] Sufferers of congenital syphilis and wives of philandering husbands were more often included in charitable giving, primarily because they were considered to be the bearers of “innocent infections.” In other words, it was not THEIR sexual promiscuity that resulted in their infection. It was with their parents’ or their spouse’s.
Irrespective of whether disabled “syphilitics” were innocently infected or suffering the consequences of promiscuous sex, most of their care was provided informally by family or community members, especially in the 18th century. The Enlightenment transformed popular views of disability from something that was divine punishment for sin to defects imposed by heredity or social conditions. Leprosaria all over Europe were closing as leprosy declined but there was a new infectious disease in town, one that would also need institutions. In larger cities, charities, almshouses, and church-run hospitals offered basic care for acute conditions (such was the case for the medical records Golden used to research syphilis in Philadelphia) but the daily grind of life with a syphilis-related disability was left to the sufferer and their loved ones.
Marissa: This is not to say that sufferers did not often end up in residential facilities. Early private madhouses and asylums emerged to house the “insane,” including syphilis patients, with minimal treatment. The stigma for people suffering from madness due to syphilis was two-fold: both madness and sexually transmitted diseases were equally vilified. Even syphilis sufferers who escaped the scourge of madness could wind up in a residential facility of some sort. Those who could not work ended up impoverished and homeless. Some lived on the streets, using the visibility of their disability to beg for a living but increasingly strict vagrancy laws in Europe and America meant these folks ended up as inmates in a jail or almshouse. Foundling hospitals and poorhouses took in children with congenital syphilis but they were ill-equipped to handle their needs.
Sarah: During the 19th century, family and community care remained the norm, but more public institutions and charities for the disabled poor were established. Especially toward the end of the century, reformers increasingly recognized the socioeconomic plight of disabled people. Unfortunately, the late 19th century saw the rise of eugenic ideas, linking syphilis with “feeblemindedness” and fueling institutionalization. The asylum movement expanded, with more public and private psychiatric hospitals housing syphilis patients. Moral treatment replaced restraint, but outcomes remained poor. Some specialized schools for the blind and deaf were founded, offering education and vocational training. However, access was limited.
Just as they had the century prior, poorhouses and workhouses often housed disabled people, including those with syphilis, in harsh conditions. And there were endless barriers to care. Disabled syphilitics struggled to travel to dispensaries because of their lack of mobility or lack of help. They often could not afford their medication, many of them having lost their livelihoods due to their disability.
Marissa: The evolution of institutions dedicated to syphilis is illustrated in microcosm by the life of the London Lock Hospital. The London Lock Hospital was opened in 1747 to treat the 20% of Londonders suffering from syphilis and considerable numbers suffering from other venereal diseases. Sailors, johns, and soldiers initially filled its beds but eventually the hospital treated both sexes. In the 1780s, the hospital opened a women’s wing called the Lock Asylum for the Reception of Female Penitent Patients. Women who had been treated at the original hospital could seek housing and reform at the asylum, similar to a Magdalen Society.
In 1862, the Lock Hospital transitioned to an all-female facility and an outpatient male facility opened in Soho. Note the women’s facility was inpatient or residential while the male facility was outpatient. This may signal that women with syphilis were especially vulnerable to homelessness and therefore required residential facilities OR it could mean that women with syphilis were seen as particularly dangerous vectors of the disease and were more often confined. The Asylum remained a part of the women’s hospital and began to be called the Rescue Home in the 1890s. A maternity ward opened in 1917, specializing in births complicated by venereal disease and in the following years they added ophthalmology and genitourinary wards for patients with tertiary syphilis.
Sarah: The evolution of the Lock Hospital from a venereal hospital for dissolute sailors to a large facility with gendered wings, neonatal services, and specialty wards illustrates the recognition of syphilis’s growing burden on 18th and 19th-century European societies. While many historical sources focus on the disfiguring sores, the stigma, and the role of prostitution in this epidemic, perhaps we are better served viewing the syphilis epidemic as mass-disabling event and shifting focus from the scandal of sex and sores to the lived experience of sufferers disabled by the disease in a society that did not accommodate disability.
Marissa: When it comes to the 20th century, our source material is so much stronger than it is for other eras that it means we have several well-documented mass-disabling events to choose from. During the 20th century, epidemiologists began conceiving of the disabling impacts of epidemic disease as the epidemics’ “long tails.” This first became clear in the 19-teens when polio epidemics ravaged the United States. We’ll come back to polio in a bit because it’s a saga in itself. Polio’s paralytic consequences are well-known. But even diseases that are not known for their disabling consequences have “long tails.”
This is clear in the 1918 Spanish Influenza epidemic. By the 1920s, it was clear that influenza had neurological effects. Most obvious was encephalitis lethargica (EL), also sometimes called “sleepy sickness,” (not to be confused with the sleeping sickness transmitted by tsetse flies in parts of Africa). Let’s be clear here that it hasn’t been confirmed that EL resulted from influenza. The statistical case is strong but some experts believe a different viral infection was causing EL during the flu epidemic. Eighty percent of EL sufferers develop Parkinson’s disease which is a progressive condition causing motor and non-motor symptoms.
Sarah: The case for the “long flu” is even stronger when you look at the subsequent flu pandemics, one in 1957 and the other in 1968. Both of these flu outbreaks were followed by corresponding increases in encephalitis lethargica. There are also telling spikes in Parkinson’s diagnoses (though this data is imperfect because of how diagnostic coding and reporting have changed over the years.) There was a sharp spike in Parkinson’s cases in 1935 and another, even larger one around 1980. It’s possible that post-encephalitic Parkinson’s played a role in these spikes as flu-sufferers aged. Similar “long tails” have been identified for Epstein-Barr virus which triggers multiple sclerosis and Ebola which can lead to the very disabling Post-Ebola syndrome.
Marissa: But perhaps the best-known epidemic, mass-disabling event was Poliomyelitis. Jonas Salk’s polio vaccine stopped this even in its tracks in 1955. But prior to then, polio was endemic in the United States (meaning it popped up every summer as a seasonal infection). Sometimes, during the 1910s in the USA, the late 1940s in EUrope, and the 1960s in Russia, Polio ravaged these populations in epidemic proportions.
Statistics from the 19-teens are fuzzy but we know that 6,000-8,000 Britons were paralyzed per year during each of their 1940s epidemics. With a larger population, the USA’s numbers were higher. In 1949, 42,000 Americans and in 1952, 58,000 Americans were paralyzed by Polio. The panic expressed by Americans and Britons during this pre-vaccine time is palpable in the historical record. The Board of health pasted posters on streets with high incidents of paralytic polio. One read: “Infantile paralysis is very prevalent in this part of the city. On some streets many children are ill. This is one of the streets. KEEP OFF THIS STREET.”[5]
Sarah: Films such as the 1949 Epidemic’s Children were made to spread awareness of infantile paralysis and to raise funds for research and services through the Foundation for Infantile Paralysis. The film showed scenes of children being loaded off of ambulances and placed into iron lungs, what it called “scenes from the war on infant paralysis.” Its message was urgent, its subjects pitiable, and its statistics alarming: “The 1949 cost of treatment, care, and epidemic aid will reach the staggering total of $31 million. Infantile paralysis is now draining the national Foundation at the rate of $100,000 per day and at this rate the fund will be wiped out by the end of this month.”
Marissa: The Foundation for Infantile Paralysis, founded by polio’s most famous face, Franklin Delano Roosevelt, was originally called the Warm Springs foundation. Warm Springs was a medical resort in Georgia where FDR received his post-polio hydrotherapy. He was so impressed that he invested in the spa and grew it as a program for polio survivors. Warm Springs patients found the community to be a place where their disabilities were accommodated, which was a rarity in the late 1920s/early 1930s. As FDR put in his bid for the presidency, he reoriented the foundation toward children victims (though FDR contracted polio as an adult). This became the Foundation for Infant Paralysis, and eventually, the March of Dimes.
This rebranded foundation represented FDR as fully recovered from the disease and redirected resources toward prevention and therapies that would maximize the abilities of sufferers. Their most famous event was the Birthday Balls celebrated on FDR’s birthday. But the Warm Springs community radicalized once FDR reoriented the foundation. They called attention to inaccessible architecture and employment discrimination. Some of them participated in the 504 sit-ins and witnessed the passing of the Americans with Disabilities Act in 1990.
Sarah: Despite the visibility of infant paralysis in awareness campaigns, paralysis is a somewhat rare consequence of a Polio infection. We know today that out of every 100 Polio infections, 95 of them will produce no symptoms in the sufferer. Three will produce minor symptoms like fever, headache, sore throat, and malaise. One in every hundred will result in viral Meningitis, an inflammation of the meninges which can be quite scary. Sufferers are desperately ill and suffer from a spastic spine. While this outcome is super scary I’m sure, most people who experience this heal in a few days without any permanent damage. The last one-in-one-hundred is the outcome that pre-vaccine parents agonized over.
Marissa: One percent of Polio infections result in paralysis. Some people who think they have a mild version of the infection rebound around day 7 or 8 which more acute symptoms. This is when the infection damages the spinal cord. Some paralysis can be mild and in small muscles that don’t control much of the body, such as a squint, crooked smile, or an errant eyeball. Most commonly in children, they lose the use of one of their legs (monoplegia). For adults who experience this complication, tetraplegia (the lost of all four limbs) is more common. Still others lose the use of both of their legs. Sadly, paralysis can extend to the muscles surrounding the rib cage which make it impossible for sufferers to breathe. About 10-15% of people who contract paralytic Polio die from suffocation. This is why the recurring image of Polio in most people’s heads in people (usually children) in iron lungs. Interestingly, not all paralysis is permanent. Tetraplegics can even make full recoveries. Typically, the level of paralysis one month after the infection passes is the level that people live with for the rest of their lives.
Sarah: An even smaller fraction of Polio sufferers develop an even more severe complication: polioencephalitis or inflammation of the brain. This usually happens in infants and results in blindness, spasticity, and intellectual disability. One 1914 Manual on Infantile Paralysis opines that “a majority of all morons, idiots, and imbeciles are victims of polioencephalitis affecting the frontal lobes.”[6] This outcome of brain damage during infancy was perhaps the most feared outcome of a Polio infection in the early 20th century. To a society obsessed with eugenic science, intellectual disability was tantamount to a death sentence.
Marissa: Still, polio infections were so aggressive that the number of disabled children and adults sky-rocketed in the pre-vaccine years. Children disabled by Polio faced difficult childhoods. The piecemeal paralysis and bone-weakening damage they suffered often resulted in severe disfigurement such as mismatched leg lengths, severe spinal curvature, and a deformity of the foot often called “dropfoot.” All of these deformities limited their mobility and some even limited their breathing. These children were rarely accommodated and many of them spent their lives in institutions. Sarah’s episode on 504 tells a bit of the story of Judy Heumann, a disability rights activist who was disabled by Polio. Her experience of being excluded from regular school was one of the reasons why she evolved into an activist.
Sarah: But this isn’t even close to the end of this mass-disabling event. Mercilessly, Polio has its own “long tail.” As early as the 1870s, physicians were noticing that their polio patients were suffering relapses decades or more after their initial infections. But it wasn’t until 1969 that scientists isolated and defined Post-Polio Syndrome (PPS). We believe that PPS affects 20-40% of patients who had polio 30 years earlier. Many of these sufferers had asymptomatic or mildly symptomatic infections. If hundreds of thousands of Americans were paralyzed by Polio infection and that only happens to 1% of infections, you can imagine how many people have PPS today, many of whom don’t even know it. As of 2013, PPS was the leading cause of disabling motoneurone disease in the United States. Long tail indeed.
Marissa: The mass-disabling nature of Polio epidemics put pressure on policymakers to address the needs of an increasingly disabled population. This phenomenon has been studied extensively in terms of wars— Sarah’s own book is about the long tail of disabling injuries suffered by soldiers during the Civil War, to which the U.S. government responded with veteran’s pensions– but epidemic disease and environmental disaster are less often considered mass-disabling events especially when there is a delay in the onset of disability after infection (like with Post-Polio Syndrome).
Another type of mass-disabling epidemic was virtually unknown until the 1940s– those of teratogenic diseases. Teratogens are environmental factors that harm the developing embryo or fetus in utero. It takes decades to identify teratogenic diseases because it’s the mother who contracts the infection, sometimes before she even knows she’s pregnant, and affected infants are almost never detected at birth. The epidemic disease that best illustrates the mass-disabling effect of teratogens is Rubella, more commonly known as German measles.
Sarah: In the nineteenth- and early-twentieth-centuries, a Rubella diagnosis could be a relief. The infection often resembled the more traditional (and deadly) measles, as well as Scarlet fever (also deadly before antibiotics). So for about a century, parents terrified of the impact of childhood diseases on their progeny broke down in sobs of relief when the doctor told them it was Rubella. The most common symptoms were low grade fever, rash, and enlarged lymph nodes. Rubella was considered the mildest of the pre-vaccine childhood illnesses. One 19th-century physician wrote: “the disorder is in itself an unimportant one,in that it perhaps never destroys life.” Another called Rubella “an inoffensive complaint.”
Sarah: But this attitude changed in the early 1940s. There was a massive Rubella epidemic after the end of WWII. Recall that this was the era of the birth of the “Baby Boomers.” American families were having more children than ever before. In 1941, an Australian physician named Norman Gregg began noticing an unusual trend among his patients. Gregg was an ophthalmologist at the Royal Alexander Hospital for Children in Sidney, Australia. He began seeing more babies with congenital cataracts and unusual eye movements. Some of these children also died suddenly of congenital heart defects in infancy. These complaints having been very rare in his career until then, Gregg investigated what might be causing this sudden uptick in ophthalmological problems in Australia’s infants. The mothers who chatted in his waiting room gave him an idea to pursue. Apparently several of them whose children exhibited the same symptoms revealed to each other that they’d contracted Rubella in early pregnancy.
Marissa: Gregg amassed data from his own practice and from those of his colleagues, Gregg was able to publish a study arguing that contracting Rubella in early pregnancy caused congenital defects in the eyes and heart. After his initial findings were picked up by the media, he was put in touch with mothers of disabled infants around the world whose stories gave him enough data to conclude that Rubella infections in early pregnancy also caused deafness. This deafness finding came later because the children who had been infected in the post-war epidemics were reaching a later age when receptive and expressive speech were expected. Mothers often did not know about their child’s hearing loss until this milestone was missed and investigated.
Nobel prize winning virologist Macfarlane Burnet once wrote: “the recognition of the consequences of fetal infection with rubella was the most important contribution ever made to medicine in Australia.”[7] As has always been the case, unborn children and infants are perhaps the easiest demographic to advocate for. It helped that most of the families impacted by fetal rubella infections were white and middle-class. The scientific community responded with additional research and the media told the stories of families whose infants had been affected.
Sarah: Both the media and the medical establishment sprang into action. In 1949, Dr. Charles Swan compiled all extant data on fetal rubella infections and the outcomes of affected children from around the globe. He found that the resultant disabilities were more wide-ranging than Gregg once thought. In addition to blindness, deafness, heart defects, and intellectual disability, Swan found correlations between fetal rubella infection and skeletal deformities, hypotonia (poor muscle tone), and delays in eruption of milk teeth. Most shocking was Swan’s precision about when in pregnancy women were most vulnerable. The risk of “giving birth to a child with congenital anomalies following contraction of rubella in the first four months of pregnancy ranges from 83.2 in the first month to 61.1 percent in the fourth month, with an average of approximately 74.4 percent.” If the rubella was contracted in the last 5 months of gestation, only 11.1 to 29.9 percent of infants would carry the anomalies.
Marissa: The possibility of congenital anomalies if rubella was contracted in the first month– over 80 percent– is incredibly high. And since most women didn’t even know they were pregnant until a missed period, women’s anxiety about fetal rubella infection was uncontainable. Media outlets took up this panic with gusto. In her study of letters to the editor written by anxious mothers in the 1940s, Leslie Reagan discovered they had a range of concerns. Most of them had been introduced to teratogens for the first time and old wive’s tales about maternal markings and heritable infirmities came back to haunt them.
Sarah: Interestingly, Reagan suggests that rubella research may have actually had a pro-natalist effect. Mothers who were convinced they had caused their child’s disability through a genetic “taint” or some inadvisable behavior during pregnancy were relieved to discover that rubella had been the cause. Women who had refused to have more children for fear of bringing more disabled children into the world felt free to have more knowing that fetal rubella infection had been the cause of their first child’s disability. While some of these views come from the difficulties of parenting a disabled child in a world unfriendly to disabilities, at least some of these concerns arose from eugenic attitudes with darker implications.
Marissa: According to Gregg, “The only sure treatment available is that of prophylaxis… We must recognize and teach the potential dangers of such an epidemic… and do all in our power to prevent its spread and particularly to guard the young married woman from risk of infection.”[8] While the baby boom did not begin official until 1946, birth rates had been on a sharp ascent since 1940, the same year that Rubella infections reached epidemic levels in the U.S. The impact of such a large proportion of disabled infants is immediately apparent in the historical record.
Sarah: Of course, most parents wanted to know their children’s prognosis. The answer, said Gregg, depended on each case’s particulars. It was becoming more clear throughout the 1940s that some infants could be more affected than others. One pediatrician, Dr. Donald Vickery, identified in the 1940s what came to be called congenital rubella syndrome (CRS) in the 1960s. Children suffering from CRS were often “deaf-mutes,” had microcephaly (small head due to incomplete brain development), “general instability of their nervous systems,” and what Vickery termed “backwardness” which can perhaps be translated into today’s intellectual disability, developmental delay, or neurodivergence.
Marissa: This category of child was given the gravest prognosis by Gregg. He told parents that deaf and blind children, with adaptive technology and appropriate services, could be expected to be educated, employed and to live productive adult lives. But those suffering from Vickery’s “backwardness” (again two decades later called CRS) were deemed by Gregg to be “ineducables.” Gregg urged parents of these children to educate themselves about their children’s conditions and to start intensive therapies immediately in hopes that their children could lead some sort of normal life. But Gregg had low expectations, calling their education “extremely slow and difficult.” Gregg, who was genuinely empathetic to “rubella moms” as they became known, expressed his recommendation of institutionalization for some of these children: “In some cases the strain imposed on the mother in caring for the child is more than she should be expected, or permitted, to endure.”[9]
Sarah: Indeed, this appeared to be the fate of many children with CRS. During the 1940s and 1950s, new admissions of intellectually disabled children to public institutions doubled. Rubella’s “long tail” stretched inevitably forward during the 20th century. While it’s tempting to judge parents who institutionalize their disabled children and to abhor doctors who suggest it, it’s worth noting that 1940s and 1950s America was not a supportive place for disabled children or adults. Families had little education or resources to care for their children. The stigma of intellectual disability isolated entire families and institutionalization tore them asunder. Disability historian Leslie Reagan notes “If moral support, material help, and services did not exist and responsibility fell on the mother, then mothers’ distress was going to be a normal and socially produced outcome of having a disabled child, and institutionalization was often the answer.”[10]
Marissa: Doctors despaired that society would be able to tolerate the burden; Dr. Swan envisioned near demographic collapse: “If large numbers of cases of rubella in pregnancy continue to occur, they will constitute a social problem of some magnitude, for the consequences are not confined to the affected child. Indeed, the shadow falls upon the family, especially the mother and the other children, on the children as yet unborn, and on the community generally. The lot of children afflicted with a congenital abnormality of eye, ear, or heart is a sad one, but when two or more of these defects are present in combination, and the more so if there is superadded mental retardation, their fate is tragic in the extreme, and death at an early age can be only looked upon as a merciful release.”[11]
Sarah: While the Holocaust had done a lot to discredit eugenic science, eugenic thought was still deeply entrenched in American society. Women who would never before consider terminating a pregnancy, sought abortions to avoid giving birth to an affected baby and becoming a “rubella mom.” Physicians sometimes recommended therapeutic abortion in cases where mothers contracted rubella in the early months of their pregnancy. There was one problem though, in the United States, abortion was illegal. In some states, even therapeutic abortion was illegal.
Marissa: Leslie Reagan argues that it was the very visible 1960s rubella epidemics, which affected mostly white, middle-class, heteronormative, married nuclear families, that ignited the reproductive rights movement. It was through the advocacy of “rubella parents” that abortion law reform began. Rubella parents argued that it should be a woman’s right to either terminate or continue with a pregnancy that is likely to result in a disabled child. Medical malpractice suits filed by rubella parents against their physicians also resulted in the availability of amniocentesis in the United States. The media coverage of children disabled by rubella and the stories of their guilt-ridden, devastated, and overworked parents flipped the script on abortion, making abortion respectable in a way it hadn’t been prior to the 1960s.
Sarah: Reagan points out that this was a movement started by parents, not one started by the disabled people themselves. One would imagine that a movement spearheaded by “rubella babies” would not have prioritized abortion and amniocentesis. Disability scholars are torn on the meaning of rubella’s impact on reproductive rights. But it’s fair to point out that rubella parents’ activism didn’t stop there. They were also the first to win victories for accessibility to public education for their children. While their focus was more on the plight of rubella parents like them, these activists, by virtue of their whiteness, and middle-class wholesomeness, were able to amplify the disability rights movement in general. Rubella parents capitalized on the pity that mainstream Americans felt for rubella children in particular. There was nary a parent who hadn’t themselves worried about fetal rubella infection and as they celebrated their good fortune in avoiding the worst consequences, they pitied the children whose trajectories had been forever changed by a mild infection incurred by their mothers.
Marissa: While the stories of all these epidemics are incredibly different, we can learn something from considering them all at once. A common thread across these examples is how societies struggled to accommodate and support the disabled individuals left behind by these epidemics. Medieval lepers faced restrictions on their religious and social participation. Victims of tertiary syphilis, especially those who contracted it through promiscuity, were relegated to the fringes, with limited access to medical care and charity. Polio survivors fought against architectural barriers and educational exclusion. And the families of infants with congenital rubella syndrome despaired at the lack of resources to help them raise their children.
Sarah: Yet these epidemic-disability histories also reveal seeds of progress and activism. The leprosy epidemic spurred the development of some of the first institutions and adaptive technologies for the disabled in the Western world. Syphilis forced a reckoning with sexually transmitted diseases and a gradual evolution of medical and social supports. Polio galvanized a massive charitable response, while also radicalizing a generation of disabled activists. And rubella, for all the devastation it wrought, catalyzed the reproductive rights movement and efforts to integrate disabled children into mainstream schools.
Marissa: We may be experiencing our own mass-disabling event right now. As the world continues to grapple with the COVID-19 pandemic, a new concern has emerged: long COVID. Many people who have recovered from the initial infection are experiencing persistent symptoms that can last for months.
Long COVID, also known as Post-Acute Sequelae of SARS-CoV-2 infection (PASC), refers to a range of symptoms that can persist long after the initial COVID-19 infection has resolved. Studies have shown that up to 30% of people who have had COVID-19 may experience lingering symptoms, even if their initial illness was mild. The most common symptoms of long COVID include: fatigue, shortness of breath, “brain fog” or difficulty concentrating, headaches, joint pain, and intermittent fever
Sarah: For many people with long COVID, the ongoing symptoms can have a significant impact on their daily lives. In a survey conducted in the UK, 20% of people with long COVID reported that their ability to carry out day-to-day activities had been “limited a lot.” This can affect people’s ability to work, care for their families, and enjoy hobbies and social activities. In addition to the daily impact of symptoms, long COVID may also have long-term effects on people’s health. Studies have found that some people who have had COVID-19 experience problems with their brain and nervous system, such as difficulty thinking clearly or depression. Others may have lasting damage to their heart or lungs.
Marissa: It will be interesting to see how this mass-disabling event changes our world. But if history can teach us anything, it’s that mass-disabling events have been pivotal forces in disability history – posing immense challenges, but also provoking societal responses that, however gradually and imperfectly, have advanced disability rights and supports over the long arc of time. Understanding this history is crucial for putting our present-day responses to disabling epidemics in perspective, and for recognizing both how far we have come and how much work remains in building a world that enables all disabled individuals to thrive. The “long tail” of epidemic disability is a reminder that our obligations to inclusion and accessibility are not merely a response to the needs of the moment, but a commitment to support the generations who will live with the aftermath of the public health crises in our midst.
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[1] Dubourg, p. 68
[2] Dubourg, p .70
[3] Stricker, Louis, The Lancet-Clinic, p. 172
[4] Golden, p. 373
[6] Frauenthal, https://archive.org/details/manualofinfantil00frauiala
[7] Quoted in Reagan, Dangerous Pregnancies, p. 37
[8] Gregg, Congenital Cataracts
[9] Quoted in Reagan, Dangerous pregnancies p. 41
[10] Reagan, p. 42
[11] Reagan, p. 46
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