Media coverage of anything aging-related has long been characterized by alarmist hand-wringing, the most egregious example being the gray tsunami metaphor. Coverage of the pandemic is no exception, given that some three quarters of COVID19-related deaths are of people over age 65, many occurring in nursing homes where the virus has run largely unchecked. Typical headlines read, “Ageism on the rise” and “Pandemic making ageism worse!” Don’t make the same mistake.
The pandemic isn’t generating more prejudice, it’s glaringly exposing the ageism and ableism that have been all around us all along. Because ageism is so unexamined, the pandemic is bringing it to many people’s attention for the first time. It’s not ageist and ableist attitudes and behaviors that are on the rise, it’s public awareness and outrage about this type of stigma and discrimination. That’s what’s new and here’s what makes it so exciting: we have a historic opportunity to build on that awareness.
Yes, there’s been awfulness, but there’s also been swift, fierce pushback: against the Telegraph journalist who suggested the virus could benefit the economy by “culling” older Britons; against the Boomer Remover nickname, the handiwork of clueless trolls; against the Texas Lieutenant Governor’s grotesque proposal that grandparents sacrifice themselves for the good of the economy. Supporting this kind of grassroots activism means framing the pandemic, in all its terror and uncertainty, as an unprecedented opportunity to join forces across age, race, and class and create a more equitable post-pandemic society.
1. You’re stuck inside and it’s a feelgood documentary. Crip Camp is about an unintentionally visionary “summer camp for the handicapped run by hippies,” as the film’s co-director (and former camper) Jim LeBrecht explains early on. A sound designer with spina bifida, Lebrecht shot much of the film’s early footage with a camera strapped to his wheelchair. The world it captured is joyous and liberating.
2. Crip Camp shows people seeing and listening to each other across difference. The campers’ race, gender, families, and socioeconomic status varied widely, as did their impairments: epilepsy is not like cerebral palsy, or polio, or depression. At Camp Jened, people with profound speech impediments got heard, people in wheelchairs made out, people on crutches played baseball. At the time, the 1970s, people “like them” were routinely hidden from sight and denied access to schools, jobs, and public spaces. These campers were treated like whole people who counted.
3. Crip Camp shows what grassroots activism can do. LeBrecht headed into the project with a hunch that Jened played an outsize role in the disability rights movement of the late 70s and 80s, and he was right. In an interview in the Guardian, disability rights crusader Judy Heumann, who attended in 1971 at age 15, recalled, “This camp is where we had those conversations in the bunks late at night that made us realize, hey, there’s this civil rights movement going on around us, why aren’t we a part of it?” That camp experience—of seeing and being seen, of glimpsing a radically different and inclusive future—launched a generation of activists.
4. Crip Camp shows the Capitol Crawl, the most affecting act of civil disobedience ever, and arguably most effective. On March 12, 1990, frustrated by years of legislative inaction, more than 60 activists abandoned their crutches, walkers, and wheelchairs and began crawling up the 83 stone steps that lead to the Capitol. Four months later, Congress passed the Americans with Disabilities Act.
5. Crip Camp reveals our internalized bias. As non-disabled camp director Larry Ellison says, “We discovered the problem wasn’t people with disabilities, it was our problem.” Disability rights advocates use the term “non-disabled” because the likelihood of acquiring a disability, temporarily or permanently, is statistically very high for all of us. Pretending otherwise feeds both ableism (discrimination against people with disabilities) and ageism. It reinforces dual stigma: “I may be old but at least I’m not crippled!” and vice versa. Seeing ourselves as “non-disabled”, or even “temporarily able-bodied,” has the opposite effect. It reminds us of what we have in common, and that a world that works better for people with disabilities—who come in all ages, after all—works better for everyone.
6. The pandemic makes Crip Camp’s message an urgent one. COVID19 has glaringly exposed the ageism and ableism all around us. Olders and people with disabilities. along with people with underlying health issues, are dying at disproportionate rates because we are more physically vulnerable and because we are considered more expendable, so this awareness comes at a hideous human cost. We have a historic opportunity to build upon this awareness. It’s time for olders to ally with the disability justice community and people with chronic illness by insisting on equal access for all to protection and medical treatment. (Peter Torres Fremlin’s Disability Debrief lays out an inclusive response to the pandemic.) It’s also time to remove longstanding barriers to access and opportunity. For example, accommodations enabling people to work remotely, which people with disabilities had requested for decades, magically became possible once the health of the general public was a risk. These accommodations need to be permanent.
Achieving equal rights for every human being, independent of age and physical condition, means addressing the intersection of ageism and ableism. This reckoning is long overdue and tactically necessary, for reasons I’ve been writing about for a while. The pandemic makes it ethically imperative and terrifyingly urgent. It’s time to build on what we learned at Crip Camp, whose campers went on to change the way we see disability, changing it from a personal misfortune to a social problem: “The problem is not that I’m in a wheelchair, the problem is that there are stairs between me and where I want to go.” Boom. That’s what we need to do around aging: “The problem is not that I have wrinkles, the problem is that I’m being discriminated against because of it.” It’s time to join forces, demand equal access and equal rights, and enforce them as the pandemic recedes into memory.
This Guest Post is by Janine Vanderburg and Sara Breindel, the Director and Content Manager, respectively, of Changing the Narrative in Colorado, and first appeared on their website. Changing the Narrative is a campaign to change the way people think, talk and act about aging, older people and ageism.
Who will get access to care when there is a shortage in a crisis like COVID19?
On Saturday, April 4, a committee advising Colorado’s Governor provided an answer. They issued Crisis Standards of Care Guidelines for hospitals during the COVID-19 Pandemic. The standards are intended to guide hospitals in making tough triage decisions when there are insufficient ICU beds, ventilators, and other resources for all the people who need them.
According to the standards, if implemented in a crisis situation, the triage process will be used for ALL patients who may require critical care resources, not just those who suffer from COVID-19.
A note before you read on: We totally understand the importance of having a set of Crisis Standards of Care. We need standards so people can be treated fairly across the state and our dedicated healthcare practitioners are spared from making individual bedside heart-rending decisions. Their jobs are demanding enough without the added burden. There is a lot in this plan to be proud of.
The best care for the most people
The stated goal of Colorado’s CSC is to “provide the best care for the most people”.
For the last two years, I’ve been traveling around the state, giving workshops and presentations, as well as writing and using social media to change the way Coloradans think, talk and act about aging and ageism. We’ve had two goals in mind:
- Help people recognize the value that all of us bring to children, communities, workplaces, and society as we get older
- Increase awareness of ageism and its negative effects on health, financial security, the economy and public policy decisions.
We’ve connected with partners across the state, people who believe that age-friendly policies make this a better Colorado for everyone.
When I sat down to read the standards on Monday morning, I had to read them twice. Dismay led to anger.
Ageism—defined by the World Health Organization as “stereotyping, prejudice and discrimination based on age”—is infused throughout.
In the long list of factors that will NOT be used to make triage decisions, AGE was missing:
“At no point should factors clinically and ethically irrelevant to the triage process (e.g. race, ethnicity, ability to pay, disability status, national origin, primary language, immigration status, sexual orientation, gender identity, HIV status, religion, veteran status, “VIP” status, or criminal history) be used to make triage decisions.”
This is not just an omission. Specifically, age is a basis to make choices in deciding who will get care. This is despite statements from the U.S. Office of Civil Rights that civil rights laws apply to these situations:
“Persons with disabilities, with limited English skills, and older persons should not be put at the end of the line for health care during emergencies.”
Ageism in our crisis standards of care
How will this work? Let’s dig into the details here. If these guidelines were put in place, each patient would be assessed according to a tiered system. The recommended standard call for three tiers of triage. (Triage is a process where certain criteria are used to decide the order in which people should be treated, particularly when there is a limited amount of care available.)
The first tier assesses two criteria and combines scores for each, with lower scores getting preference for treatment. Those criteria are:
- How likely is someone to survive the immediate situation?
- What comorbidities does someone have that “correlates with 1-year and 10-year survival?” This is where age now factors in two ways: If you are under 50, you are assigned a score of 0, from 50-59, a score of 1, with an additional point for each subsequent decade of life.
Under this scoring, if someone age 45 and someone age 60 arrived at the hospital, with equal chances of surviving, and there was only one ICU bed, the 45-year-old would receive it. The 45-year-old would have 0 points, and the 60-year-old would have 2.
Now we go to double jeopardy part of Tier 1. Comorbidities are essentially one or more health conditions that exist in a person at the same time, things like heart disease and diabetes. We know that as we age, we are more likely to have a chronic condition.
Additionally, this may become triple jeopardy for an older Coloradan who is a person of color. For example, health disparities data show that there are higher rates of conditions like asthma and diabetes among African-Americans. These conditions would increase comorbidities scores. People who have lived without health care for a while or who live with fewer resources in general may deal with increased health issues. This pandemic is already hitting certain communities harder.
Next, if Tier 1 results in a tie score, then the triage team would give preference to the following:
- Children under age 17
- Health Care Workers
- First Responders
Here is where older Coloradans face final jeopardy. If somehow you’ve made it through the first steps and emerged with a tie score—guess what? You face the hurdle of “life years saved”. “Priority for a scarce resource can be given to a patient with more life years to be saved,” or, simply stated:
Older people, get in the back of the line for treatment.
In contrast to this built-in ageism in the crisis standards of care, here’s what the American College of Physicians (ACP) has to say about using “life years saved for triage:
“Allocation of treatments must maximize the number of patients who will recover, not the number of “life-years,” which is inherently biased against the elderly and the disabled.”
As I read these guidelines, specific examples involuntarily flashed through my mind. I thought of some of the people I’ve met since starting Changing the Narrative:
- The Vietnam fighter pilot who after he sold his company, has been mentoring younger vets in starting businesses
- The 60+ aged women at workshops in Logan, Mesa, Montrose and Summit counties who run all the volunteer programs
- The leaders of different organizations in Larimer County who have all come together to create an age-friendly community
- The quilters who are using their mad sewing skills to make masks
- Our volunteer Change AGEnts at Changing the Narrative who have been out in the community raising awareness about ageism, and letting employers know the tremendous value that older workers can bring to teams
All of them—moved to the back of the triage line. Because of their age.
This is Colorado. We can do better than ageism in our crisis standards of care.
What do we do if we don’t use age as a factor?
The American College of Physicians recommends the following instead of using life years and age as factors:
“When, as in times of health system catastrophe, routine “first come, first served” or “sickest first” approaches are no longer appropriate, resource allocation decisions should be made based on patient need, prognosis (determined by objective scientific measures and informed clinical judgment) and effectiveness (i.e., the likelihood that the therapy will help the patient recover).”
The first part of Colorado’s Tier 1 standard is based on prognosis, and uses an objective measure.
Furthermore, renown geriatrician Louise Aronson calls for health equity and outlines a path forward in a recent online piece in the New England Journal of Medicine:
“…we can acknowledge the particular presentations, needs, and risks of elders in our protocols and planning. The Centers for Disease Control and Prevention did not create a Covid-19 Web page directed to elders until mid-March, nearly 2 months after we learned of that group’s extraordinarily high risk for critical illness and death. Most medical centers have protocols for children and adults, but nothing for elders. Basic standards of health equity demand protocols with elder-specific diagnostic, treatment, and outcome-prediction tools, addressing lower baseline and illness-related body temperatures, atypical disease presentations, and care options geared to the life stage, health status, and life expectancy of older patients.”
What can we do about ageism in standards of care?
We can use our voices. We can let our communities know about this ageism in our crisis standards of care. As people who care, we can request that our leaders join together to eliminate current discriminatory provisions from the Critical Standards of Care. In Colorado, that would mean making the following changes to the recommended standards:
- Including age in the list of factors that will not be used for triage decisions
- Eliminating point scoring for age from Tier 1, as well as considering impact on people of color of some of the comorbidity scoring.
- Eliminating the Tier 3 tiebreaker of Life Years Saved.
In so doing, we would be upholding longstanding Colorado values of justice and fairness for all, a Colorado which “continues to treat each individual with dignity and respect.”
These are terrifying times, especially for older people. Keep in mind that the great majority of us won’t get COVID19, or will recover if we do. As New York City parks turn into temporary hospital and burial grounds—yikes!!!—it’s hard not catastrophize, but anxiety is itself a health risk. Even most of the 80- and 90-year-olds who catch COVID19 will pull through. Remember, too, that should the worst happen, you have the right to decide your own fate. At a time when huge aspects of our lives feel out of our control, that’s an empowering idea.
You might want doctors to do everything possible to keep you alive. You might feel like many of my GP’s older patients, who’ve told her they never want to be put on a ventilator. Maybe you don’t even want to be taken to the hospital, like New York’s Shatzi Weisberger or many of the Britons who called into this BBC-4 radio show. Or perhaps, like me, you fall somewhere in between, with those who’d like to be intubated but not kept alive if our organs start to fail and our brains are affected. I doubt it’s going to come to that because I’m lucky enough to be able to stay inside during these grim weeks, and I sure hope you can too. In any case, I want people to know my wishes so they can help carry them out.
No matter what you think you’ll want, the most important step is to tell someone, or a group of people. As gerontologist Jan Baars puts it, “Autonomy requires collaborators.” This benefits you, first and foremost, as well as those who care about you. Choose an official, trusted Health Care Proxy, the person who will insist that healthcare providers meet your conditions if you can’t speak for yourself. The Conversation Project offers great suggestions for getting that discussion started. (Here’s how it went down with my family.) Lots of organizations, including Compassion and Choices and Prepare for Your Care, can help you assess your priorities, increase your options, and get your papers in order for free. Here’s a link from AARP to free, printable, state-specific forms. Secondly, write down what you decide. Fill out an Advance Directive and sign it. Then make copies for your Health Care Proxy and your primary care doctor, and keep one by your front door in case of an emergency. Make your wishes known!
It’s way better to do this stuff around the kitchen table than during a crisis. Hopefully these documents won’t come in handy for many more years. But in the weeks immediately ahead, especially for those of us in the pandemic’s global epicenter, there are unlikely to be enough medical resources to go around, which has engendered much debate about the value of older people’s lives. (See links below to some good articles about the complex ethical calculus involved in medical rationing.) At any age and in any condition, everyone has the right to want to stay alive. Now’s the time to make your wishes known and enforceable.
Addendum: This article in Mother Jones by Clara Jeffery, “The Passwords He Carried,” has many more suggestions for getting our papers in order.
* * *
Washington Post: “Here are rules doctors can follow when they decide who gets care and who dies,” by Daniel Wikler April 1, 2020
Ars Technica, “In ERs overwhelmed by COVID-19, here’s who might get treated—and who might not,” by Beth Hole, March 26, 2020
Wall Street Journal, “Rationing Care Is a Surrender to Death,” by. Allen C. Guelzo, March 26, 2020
The pandemic has exposed the ageism and ableism around us as never before. I figure Amazon got the memo, because the ebook’s on sale today for less than a cup of coffee. (Fancy coffee.) It’s not just cheap, it’s good.
“One of the 100 best books to read at any age.” – Washington Post
“Ten Books to Help You Foster A More Diverse and Inclusive Workplace.” – Forbes
Please grab a copy and spread the word!
There’s no question that ageism and ableism—the early assumption that the virus killed “only” the old and the ill—underlie the lax global response to COVID19. This means there’s never been a more urgent time to speak out against them. Old School has the tools you need. Today’s newsletter suggests three home-grown ones to start with.
This article was first published by the PBS site NextAvenue, which named me their Influencer of the Year in Aging in 2016–and which deleted the last paragraph.
Why is coronavirus spreading across the US? Not because a virulent virus jumped from an animal into a human. Not because of China, or selfish youngers and clueless olders. COVID is spreading because the virus is new and contagious and because we live under a system that picks profit over people at every turn. The pandemic has exposed our shredded social safety net as never before, and a hospital system hollowed out by decades of cost-cutting, underfunding, and chronic understaffing by underpaid workers to benefit profiteering corporations.
This is playing out nakedly on Twitter at the moment. The hashtag #NotDying4WallStreet is trending as people recognize the implications of President Trump’s calls to end the lockdown soon, which infectious disease experts strongly recommend against. #GrandparentsShould is trending too, in response to the suggestion that grandparents should sacrifice themselves for the good of the economy. (Sample tweet: #GrandparentsShould stop voting for Nazis who want to kill them off to give the stock market a boost.)
Never have ageism and ableism been so glaringly exposed—as well as the systemic racism that underlies far higher death rates among Black and Latinx people.
We olders are more at risk from COVID19. That’s biology, not bias. Our immune systems are weaker, our lungs less elastic, and we’re more likely to have underlying conditions—such as heart disease, lung disease and diabetes—that make us more vulnerable to other illnesses and slower to recover. This doesn’t mean that the day someone turns 65, they’re at higher risk. It also says very little about what any given individual is up against when it comes to getting sick or getting better. Underlying health plays a much bigger role than age does. And while older people do have more health issues, plenty are in excellent health and plenty of young people are immune-suppressed and/or live with chronic disease.
The most dangerous manifestation of ageism during the pandemic is the suggestion of an age limit for medical treatment, so it won’t be “wasted.” A public health emergency can indeed make it necessary to allocate resources by health status. That’s triage. I wrote earlier, “Allocating resources by age, under any circumstances, is not triage. It is ageism at its most lethal.” I’ve since come to understand that when hospitals get completely overwhelmed, as has happened in Italy and is likely in the US very soon, people on the front lines have to make hideous decisions, very fast, about which of the many people in dire condition are likely to benefit most from getting, say, the only available ventilator. These decisions involve a complex ethical calculus, delineated in this Ars Technica article and this GeriPal podcast. Age is way quicker to assess than health status, and advanced age is a clear disadvantage under these circumstances. So is having a visible disability. Boom. Such decisions are tragic, horrible, wrong, and—under these conditions—sometimes necessary. I sure don’t envy the heroic people making them in hospitals today.
In every other context, it’s up to the rest of us to push back against every form of social bias. Are testing and outreach prioritizing men over women, white people over people of color, youngers over older, cis people over trans? Are we including the most exposed—not just olders but black and brown people, people with disabilities and those who are homeless or incarcerated—in our efforts? We are engaged in a massive collective experiment to protect the vulnerable, whoever they turn out to be. It’s high-stakes, and it’s as intersectional as it can get. We are truly all in this together.
Let’s also ditch the generational finger-pointing and place the blame where it belongs. If we didn’t have a government controlled by corporate interests like Big Pharma and insurance companies, and it had invested in decent healthcare for all, supported public hospitals, not fired the scientists trained to deal with outbreaks, gave a damn about the most vulnerable, and not ignored the coronavirus threat for months, there might be enough ventilators to go around.
I don’t know which person in this video is more annoying, the college kid saying, “If I get corona, I get corona. I’m not going to let it stop me from partying,” or the 93-year-old dissing the partiers: “They think they know it all. They think they’re better than children were years ago.” Both are foolish. The people protesting that it’s Gen Z crowding Florida beaches aren’t much better. “We Millennials are not at Spring Break. We’re at home yelling at our Boomer parents,” who won’t stay home because:
- they have “faith over fear;”
- they only watch Fox News and think the epidemic is a hoax;
- they’re not “elderly” and need to prove it by going out and about. (Let’s hear it for age denial of the lethal variety!)
Some young people are selfish and some are saints. The same, of course, is true of their elders. Many olders are healthy as horses, while many youngers are immunocompromised. Heroes of all ages are putting their lives on the line in clinics and hospitals around the world. Ethics and education and circumstance and culture and countless other factors shape behavior far more than age does. (See Helpful Diagram Below, the product of a fit of frustration earlier this week.)
Why is it so urgent to avoid old-vs.-young ways of framing this crisis? Because finger-pointing undermines the solidarity we need now—more than ever before in human history—across age, class, and borders. As that Washington Post article points out, “What happens next depends largely on us—our government, politicians, health institutions and, in particular, 328 million inhabitants of this country—all making tiny decisions on an daily basis with outsize consequences for our collective future.” The future of the entire world, that is.
According to the Centers for Disease Control and Prevention (CDC), older people and people with underlying health conditions are about twice as likely to “develop serious outcomes” from the COVID19 coronavirus—get really sick and possibly die—as younger and otherwise healthier people.
One reason is that older immune systems are less able to fight off infections. Lungs also deteriorate, becoming less elastic and resilient over time, and like the seasonal flu, COVID19 is a respiratory virus. And olders are more likely to have underlying conditions—such as heart disease, lung disease and diabetes—that make us more vulnerable to other illnesses and slower to recover.
This doesn’t mean that the day someone turns 65, they’re at higher risk. It also says very little about what any given individual is up against when it comes to getting sick or getting better. Underlying health plays a much bigger role than age does. And while older people do have more health issues, plenty are in excellent health and plenty of young people are immune-suppressed and/or live with chronic disease.
Being old doesn’t make you more likely to spread the virus either, any more than being ethnically Asian does. Yet some people have been avoiding contact with people who “look a bit Chinese.” Hello, racism! Where does ageism enter in? In suggestions, mostly on social media, that since “only old people” have been dying from this coronavirus in significant numbers, the rest of the world needn’t be too worried about it. Even worse, in suggestions of setting an age limit for medical treatment, so it won’t be “wasted” on people less likely to survive. A public health emergency can indeed make it necessary to allocate resources by health status. That’s triage. Allocating resources by age, under any circumstances, is not triage. It is ageism at its most lethal.
In some quarters the AIDS epidemic was considered divine retribution for sinful behavior. Shamefully, many of those most at risk, already marginalized by homophobia and racism, were overlooked and even left to die. Doing the same to those marginalized by ageism—the corrosive belief, at its ugly heart, that to age is to lose value as a human being—is just as reprehensible. It is not ethical, or legal, to allocate resources by race, gender, or sexual orientation. Doing so by age is equally unacceptable. Period.
No one deserves to be sick. Everyone deserves respect and care. Viruses infect everyone. Humans shouldn’t discriminate either. The way we respond to a challenge, especially a fearsome one, shows who we truly are, as individuals and societies. There’s nothing like a global pandemic to prove that we’re all in this together. Let’s act like it, in solidarity across age, race, and borders.
March 17th postscript: Since writing this post, I’ve come to understand that when hospitals get completely overwhelmed, as has happened in Italy and is likely in the US very soon, people on the front lines have to make hideous decisions, very fast, about which of the many people in dire condition are likely to benefit most from getting, say, the only available ventilator. Their job is to save as many lives as possible. Age is way quicker to assess than health status, and advanced age is a clear disadvantage under these circumstances. Boom. Such decisions are tragic, horrible, wrong, and—under these conditions—necessary. I sure don’t envy the people making them. If we didn’t have a government controlled by corporate interests like Big Pharma and insurance companies, and it had invested in decent healthcare for all, supported public hospitals, not fired the scientists trained to deal with outbreaks, gave a damn about the most vulnerable (not just olders but people with disabilities and/or substance abuse problems and/or who are homeless and/or incarcerated) and not ignored the coronavirus threat for months, far fewer people would now be at risk. Capitalism kills.
March 22 postscript: A fascinating and nuanced New York Times article about the ethics of medical rationing, and a terrific GeriPal podcast in which two doctors break this down in the light of the current crisis.