Paralyzed By Polio, This British Tea Broker Changed the Course Of Medical History Forever
In December 1958, on a vacation with his wife in Kenya, a 28-year-old British tea broker named Robin Cavendish became suddenly ill. Neither he nor his wife Diana knew it at the time, but Robin's illness would change the course of medical history forever.
Robin was rushed to a nearby hospital in Kenya where the medical staff delivered the crushing news: Robin had contracted polio, and the paralysis creeping up his body was almost certainly permanent. The doctors placed Robin on a ventilator through a tracheotomy in his neck, as the paralysis from his polio infection had rendered him unable to breathe on his own – and going off the average life expectancy at the time, they gave him only three months to live. Robin and Diana (who was pregnant at the time with their first child, Jonathan) flew back to England so he could be admitted to a hospital. They mentally prepared to wait out Robin's final days.
But Robin did something unexpected when he returned to the UK – just one of many things that would astonish doctors over the next several years: He survived. Diana gave birth to Jonathan in February 1959 and continued to visit Robin regularly in the hospital with the baby. Despite doctors warning that he would soon succumb to his illness, Robin kept living.
After a year in the hospital, Diana suggested something radical: She wanted Robin to leave the hospital and live at home in South Oxfordshire for as long as he possibly could, with her as his nurse. At the time, this suggestion was unheard of. People like Robin who depended on machinery to keep them breathing had only ever lived inside hospital walls, as the prevailing belief was that the machinery needed to keep them alive was too complicated for laypeople to operate. But Diana and Robin were up for the challenges – and the risks. Because his ventilator ran on electricity, if the house were to unexpectedly lose power, Diana would either need to restore power quickly or hand-pump air into his lungs to keep him alive.
Robin's wheelchair was not only the first of its kind; it became the model for the respiratory wheelchairs that people still use today.
In an interview as an adult, Jonathan Cavendish reflected on his parents' decision to live outside the hospital on a ventilator: "My father's mantra was quality of life," he explained. "He could have stayed in the hospital, but he didn't think that was as good of a life as he could manage. He would rather be two minutes away from death and living a full life."
After a few years of living at home, however, Robin became tired of being confined to his bed. He longed to sit outside, to visit friends, to travel – but had no way of doing so without his ventilator. So together with his friend Teddy Hall, a professor and engineer at Oxford University, the two collaborated in 1962 to create an entirely new invention: a battery-operated wheelchair prototype with a ventilator built in. With this, Robin could now venture outside the house – and soon the Cavendish family became famous for taking vacations. It was something that, by all accounts, had never been done before by someone who was ventilator-dependent. Robin and Hall also designed a van so that the wheelchair could be plugged in and powered during travel. Jonathan Cavendish later recalled a particular family vacation that nearly ended in disaster when the van broke down outside of Barcelona, Spain:
"My poor old uncle [plugged] my father's chair into the wrong socket," Cavendish later recalled, causing the electricity to short. "There was fire and smoke, and both the van and the chair ground to a halt." Johnathan, who was eight or nine at the time, his mother, and his uncle took turns hand-pumping Robin's ventilator by the roadside for the next thirty-six hours, waiting for Professor Hall to arrive in town and repair the van. Rather than being panicked, the Cavendishes managed to turn the vigil into a party. Townspeople came to greet them, bringing food and music, and a local priest even stopped by to give his blessing.
Robin had become a pioneer, showing the world that a person with severe disabilities could still have mobility, access, and a fuller quality of life than anyone had imagined. His mission, along with Hall's, then became gifting this independence to others like himself. Robin and Hall raised money – first from the Ernest Kleinwort Charitable Trust, and then from the British Department of Health – to fund more ventilator chairs, which were then manufactured by Hall's company, Littlemore Scientific Engineering, and given to fellow patients who wanted to live full lives at home. Robin and Hall used themselves as guinea pigs, testing out different models of the chairs and collaborating with scientists to create other devices for those with disabilities. One invention, called the Possum, allowed paraplegics to control things like the telephone and television set with just a nod of the head. Robin's wheelchair was not only the first of its kind; it became the model for the respiratory wheelchairs that people still use today.
Robin went on to enjoy a long and happy life with his family at their house in South Oxfordshire, surrounded by friends who would later attest to his "down-to-earth" personality, his sense of humor, and his "irresistible" charm. When he died peacefully at his home in 1994 at age 64, he was considered the world's oldest-living person who used a ventilator outside the hospital – breaking yet another barrier for what medical science thought was possible.
Neil deGrasse Tyson Wants Celebrities to Promote Scientists
"President Kennedy was the first president to not wear a hat. Have you seen men wearing hats since then?" Neil deGrasse Tyson, one of the world's few astrophysicists with a household name, asks on the phone from his car. Well, no. "If I wear some cowboy hats, it's because it's the outfit, it's not because that's my standard equipment when I leave the home."
"We have classes on 100 things and none of them are on the ability to distinguish what is true and what is not."
But Tyson, who speaks in methodically reasoned paragraphs with lots of semi-rhetorical questions to make sure we're all still listening, isn't really making a point about Mad Men-era men's clothing trends. "Should a president influence fashion?" he says. "I think people sometimes don't know the full power they have over other people. So, that's the first prong in this comment. My second prong is, why would anyone take medical advice from a politician?"
Days before our conversation, news broke that President Trump said he was taking hydroxychloroquine, which he had hyped for months as a surefire magical cure for COVID-19 — the science just hadn't caught up to his predictions. But the science never did catch up; instead, it went the opposite direction, showing that hydroxychloroquine, when used to treat COVID-19 patients, actually led to an increased risk of death.
Alarm spread swiftly around the globe as experts cast the president's professed self-medicating as illogical and dangerous. However, it was just one of a series of wild pieces of medical advice espoused by Trump from his mighty pulpit, like that, hey, maybe disinfectants could cure people when injected into their bodies. (That also leads to death.)
But people do take medical advice from politicians. An Arizona man afraid of COVID-19 died after consuming chloroquine phosphate, which he and his wife had sitting on the back of a shelf after using it to treat koi fish for parasites. The pandemic has exposed many weaknesses in the feedback loop of society, government, the media, and science, including the difficulty of seeding accurate medical information with the masses. Many on the left and right decry a broken political and news media system, but Tyson believes the problem isn't mega-influencers like Trump. Rather it's the general public's desire to take their advice on complex topics – like the science of virology – that such influencers know nothing about.
Tyson's not upset with the public, who follow Trump's advice. "As an educator, I can't get angry with you," he says. Or even Trump himself. "Trump was elected by 60 million people, right? So, you could say all you want about Trump, kick him out of office, whatever. [There's] still the 60 million fellow Americans who walk among us who voted for him. So, what are you going to do with them?"
Tyson also isn't upset with Facebook, Twitter, and other social platforms that serve as today's biggest conduits for misinformation. After all, in the realm of modern media's history, these networks are tadpoles. "As an educator and as a scientist, I'm leaning towards, let's figure out a way to train people in school to not fall victim to false information, and how to judge what is likely to be false relative to what is likely to be true. And that's hard, but you and I have never had a class in that, have we? We've had biology classes, we've had English lit, we've had classes on Shakespeare — we have classes on 100 things and none of them are on the ability to distinguish what is true and what is not."
This is why Tyson himself doesn't engage in Trump bashing on his social feeds, but does try to get people to differentiate factual science from fake news. "I feel responsibility to participate in the enlightenment of culture and of civilization, because I have that access," says Tyson, who has 13.9M followers on Twitter, 1.2M on Instagram, and 4.2M on Facebook. He doesn't tell his followers not to inject themselves with Clorox ("no one likes being told what to do"), but tries to get them to visualize a pandemic's impact by comparing it to, say, a throng of rabbits.
"Left unchecked, 1,000 rabbits in 5 years, become 7-billion, the human population of the World. After 15 years, a 'land-ocean' of rabbits fills to one-kilometer depth across all of Earth's continents. Viruses can reproduce waaaay faster than Rabbits," he tweeted on April 6, after much of the nation had locked down to slow the pandemic's spread. For added viral impact, he attached a photo of an adorable, perhaps appropriately scared-looking, white bunny.
Of course, not all celebrities message responsibly.
Tyson is a rare scientist-turned-celebrity. His appeal isn't acting in movies or singing dance-pop anthems (if only). Rather, his life's work is making science fun and interesting to as many people as possible through his best-selling books on astrophysics and his directorship of the planetarium at the American Museum of Natural History in New York. His longstanding place in popular culture is an exception, not the rule.
And he believes his fellow celebrities, actors and pop music stars and internet influencers, should aid the public's quest for accurate scientific information. And in order to do that, they must point their followers to experts and organizations who know what they're talking about. "It could be to a website, it could be to a talk that was given. I would say that that's where the responsibility lies if you control the interests of a million people," he says.
One example of this is Lady Gaga's March 14 Instagram of herself on her couch with her three dogs with the caption, "So I talked to some doctors and scientists. It's not the easiest for everyone right now but the kindest/healthiest thing we can do is self-quarantine and not hang out with people over 65 and in large groups. I wish I could see my parents and grandmas right now but it's much safer to not so I don't get them sick in case I have it. I'm hanging at home with my dogs." (All the celebrities here in this article are my references, not Tyson's, who does not call out specific people.)
Of course, not all celebrities message responsibly. Jessica Biel and Jenny McCarthy have faced scorn for public stances against vaccines. Gwyneth Paltrow and her media brand GOOP have faced backlash for promoting homeopathic treatments with no basis in science.
"The New Age Movement is a cultural idea, it has nothing to do with religion, has nothing to do with politics, and it's people who were rejecting objectively established science in part or in total because they have a belief system that they want to attach to it, okay? This is how you get the homeopathic remedies," says Tyson. "That's why science exists, so that we don't have to base decisions on belief systems."
[Editor's Note: This article was originally published on June 8th, 2020 as part of a standalone magazine called GOOD10: The Pandemic Issue. Produced as a partnership among LeapsMag, The Aspen Institute, and GOOD, the magazine is available for free online.]
Masks and Distancing Won't Be Enough to Prevent School Outbreaks, Latest Science Suggests
Never has the prospect of "back to school" seemed so ominous as it does in 2020. As the number of COVID-19 cases climb steadily in nearly every state, the prospect of in-person classes are filling students, parents, and faculty alike with a corresponding sense of dread.
The notion that children are immune or resistant to SARS-CoV-2 is demonstrably untrue.
The decision to resume classes at primary, secondary, and collegiate levels is not one that should be regarded lightly, particularly as coronavirus cases skyrocket across the United States.
What should be a measured, data-driven discussion that weighs risks and benefits has been derailed by political talking points. President Trump has been steadily advocating for an unfettered return to the classroom, often through imperative "OPEN THE SCHOOLS!!!" tweets. In July, Secretary of Education Betsy DeVos threatened to withhold funding from schools that did not reopen for full-time, in-person classes, despite not having the authority to do so. Like so many public health issues, opening schools in the midst of a generational pandemic has been politicized to the point that the question of whether it is safe to do so has been obscured and confounded. However, this question still deserves to be examined based on evidence.
What We Know About Kids and COVID-19
Some arguments for returning to in-person education have focused on the fact that children and young adults are less susceptible to severe disease. In some cases, people have stated that children cannot be infected, pointing to countries that have resumed in-person education with no associated outbreaks. However, those countries had extremely low community transmission and robust testing and surveillance.
The notion that children are immune or resistant to SARS-CoV-2 is demonstrably untrue: children can be infected, they can become sick, and, in rare cases, they can die. Children can also transmit the virus to others, especially if they are in prolonged proximity to them. A Georgia sleepaway camp was the site of at least 260 cases among mostly children and teenagers, some as young as 6 years old. Children have been shown to shed infectious virus in their nasal secretions and have viral loads comparable to adults. Children can unquestionably be infected with SARS-CoV-2 and spread it to others.
The more data emerges, the more it appears that both primary and secondary schools and universities alike are conducive environments for super-spreading. Mitigating these risks depends heavily on individual schools' ability to enforce reduction measures. So far, the evidence demonstrates that in most cases, schools are unable to adequately protect students or staff. A school superintendent from a small district in Arizona recently described an outbreak that occurred among staff prior to in-person classes resuming. Schools that have opened so far have almost immediately reported new clusters of cases among students or staff.
This is because it is impossible to completely eliminate risk even with the most thoughtful mitigation measures when community transmission is high. Risk can be reduced, but the greater the likelihood that someone will be exposed in the community, the greater the risk they might pass the virus to others on campus or in the classroom.
There are still many unknowns about SARS-CoV-2 transmission, but some environments are known risks for virus transmission: enclosed spaces with crowds of people in close proximity over extended durations. Transmission is thought to occur predominantly through inhaled aerosols or droplets containing SARS-CoV-2, which are produced through common school activities such as breathing, speaking, or singing. Masks reduce but do not eliminate the production of these aerosols. Implementing universal mask-wearing and physical distancing guidelines will furthermore be extraordinarily challenging for very young children.
Smaller particle aerosols can remain suspended in the air and accumulate over time. In an enclosed space where people are gathering, such as a classroom, this renders risk mitigation measures such as physical distancing and masks ineffective. Many classrooms at all levels of education are not conducive to improving ventilation through low-cost measures such as opening windows, much less installing costly air filtration systems.
As a risk reduction measure, ventilation greatly depends on factors like window placement, window type, room size, room occupancy, building HVAC systems, and overall airflow. There isn't much hard data on the specific effects of ventilation on virus transmission, and the models that support ventilation rely on assumptions based on scant experimental evidence that doesn't account for virologic parameters.
There is also no data about how effective air filtration or UV systems would be for SARS-CoV-2 transmission risk reduction, so it's hard to say if this would result in a meaningful risk reduction or not. We don't have enough data outside of a hospital setting to support that ventilation and/or filtration would significantly reduce risk, and it's impractical (and most likely impossible in most schools) to implement hospital ventilation systems, which would likely require massive remodeling of existing HVAC infrastructure. In a close contact situation, the risk reduction might be minimal anyway since it's difficult to avoid exposure to respiratory aerosols and droplets a person is exhaling.
You'd need to get very low rates in the local community to open safely in person regardless of other risk reduction measures, and this would need to be complemented by robust testing and contact tracing capacity.
Efforts to resume in-person education depend heavily on school health and safety plans, which often rely on self-reporting of symptoms due to insufficient testing capacity. Self-reporting is notoriously unreliable, and furthermore, SARS-CoV-2 can be readily transmitted by pre-symptomatic individuals who may be unaware that they are sick, making testing an essential component of any such plan. Primary and secondary schools are faced with limited access to testing and no funds to support it. Even in institutions that include a testing component in their reopening plans, this is still too infrequent to support the full student body returning to campus.
Economic Conflicts of Interest
Rebecca Harrison, a PhD candidate at Cornell University serving on the campus reopening committee, is concerned that her institution's plan places too much faith in testing capacity and is over-reliant on untested models. Harrison says that, as a result, students are being implicitly encouraged to return to campus and "very little has been done to actively encourage students who are safe and able to stay home, to actually stay home."
Harrison also is concerned that her institution "presumably hopes to draw students back from the safety of their parents' basements to (re)join the residential campus experience ... and drive revenue." This is a legitimate concern. Some schools may be actively thwarting safety plans in place to protect students based on financial incentives. Student athletes at Colorado State have alleged that football coaches told them not to report COVID-19 symptoms and are manipulating contact tracing reports.
Public primary and secondary schools are not dependent on student athletics for revenue, but nonetheless are susceptible to state and federal policies that tie reopening to budgets. If schools are forced to make decisions based on a balance sheet, rather than the health and safety of students, teachers, and staff, they will implement health and safety plans that are inadequate. Schools will become ground zero for new clusters of cases.
Looking Ahead: When Will Schools Be Able to Open Again?
One crucial measure is the percent positivity rate in the local community, the number of positive tests based on all the tests that are done. Some states, like California, have implemented policies guiding the reopening of schools that depend in part on a local community's percent positivity rate falling under 8 percent, among other benchmarks including the rate of new daily cases. Currently, statewide, test positivity is below 7%, with an average of 3 new daily cases per 1000 people per day. However, the California department of health acknowledges that new cases per day are underreported. There are 6.3 million students in the California public school system, suggesting that at any given time, there could be nearly 20,000 students who might be contagious, without accounting for presymptomatic teachers and staff. In the classroom environment, just one of those positive cases could spread the virus to many people in one day despite masks, distancing, and ventilation.
You'd need to get very low rates in the local community to open safely in person regardless of other risk reduction measures, and this would need to be complemented by robust testing and contact tracing capacity. Only with rapid identification and isolation of new cases, followed by contact tracing and quarantine, can we break chains of transmission and prevent further spread in the school and the larger community.
None of these safety concerns diminish the many harms associated with the sudden and haphazard way remote learning has been implemented. Online education has not been effective in many cases and is difficult to implement equitably. Young children, in particular, are deprived of the essential social and intellectual development they would normally get in a classroom with teachers and their peers. Parents of young children are equally unprepared and unable to provide full-time instruction. Our federal leadership's catastrophic failure to contain the pandemic like other countries has put us in this terrible position, where we must choose between learning or spreading a deadly pathogen.
Blame aside, parents, educators, and administrators must decide whether to resume in-person classes this fall. Those decisions should be based on evidence, not on politics or economics. The data clearly shows that community transmission is out of control throughout most of the country. Thus, we ignore the risk of school outbreaks at our peril.
[Editor's Note: Here's the other essay in the Back to School series: 5 Key Questions to Consider Before Sending Your Child Back to School.]