no format!

my new talk is out in the world

My new talk, “Still Kicking – Confronting Ageism and Ableism in the Pandemic’s Wake,” debuted earlier this week at n4a, the national conference of Area Agencies on Aging—to rave reviews, yay! Here’s a look at some of the ground it covers:

  • Remember the early messaging about the virus? “Don’t worry, it will ‘only’ infect the old and the ill.” That is the lethal, global impact of ageism and ableism, two forms of prejudice we talk about too little and too late—for which the entire world is now paying dearly.
  • After COVID struck, there was a lot of hand-wringing, as there always is around anything age-related, with a lot of people saying the pandemic is making ageism and ableism worse. Here’s a different way to think about it: The pandemic isn’t making ageism and ableism worse, it’s exposing what’s been all around us all along—and giving us a historic opportunity to build on that awareness.
  • It doesn’t take much head-scratching to realize that much of our fear about aging is actually about how our minds and bodies might change as we move through life. That’s not ageism, it’s ableism. It’s not actually about age: plenty of youngers live with disability and plenty of olders do not. It’s the misguided belief that being non-disabled is “normal” and that leading meaningful, desirable lives means staying youthful, able­-bodied and able­-minded. Only the well-off can pursue this goal, which segregates us, sets us up to fail, and fills us with needless dread.
  • The intersection of ageism and ableism is where many of our darkest fears reside. Illness. Incontinence. Indignity. It’s also where we encounter—in direct proportion to those fears—the potential for personal liberation and collective activism.
  • When an acoustic neuroma destroyed most of the hearing in my left ear, I caught myself thinking, “At least it’s sexy brain tumor deafness instead of sad old-person deafness.”  Which makes me both ageist and ableist. So is the title of this talk—“Still Kicking”—although at least it’s on purpose. Using “still” to modify an ordinary activity (like working, or driving, or having sex) is an ageist habit because why would people stop? It’s ableist because why sort people according to whether or not they can kick?
  • Systemic discrimination is a formidable obstacle. But it is real, which makes it easier to tackle than something nonexistent: the imaginary failings which these systems created and need us to believe in.  We are not broken. We are not special. We are not lesser. We are perfect. Or, as a Buddhist friend gently corrected, “We are perfectly imperfect.”
  • All of us lucky enough to grow old—a privilege denied to many—will age into impairment of some kind. People age well not by avoiding chronic illness and disability but by adapting to them.
  • There are billions of us. Fifteen percent of the world’s population is disabled. Half of us are no longer young. Our numbers are growing. Medical advances mean that more disabled people are reaching adulthood and beyond. All over the world people are living longer: population aging is a permanent, global, demographic trend. We won’t make the most of those longer lives without confronting ageism and ableism in the world around us, starting between our ears. Nor will be as effective as these turbulent times demand. Let’s join forces.

no format!

the manifesto is out in paperback!

And a thing of beauty ! You can support your local bookstore by ordering it from IndieBound or Bookshop. It’s also available from Barnes & Noble, and of course from Amazon, where you could make my day by writing a review. If you like the book. Which you will, because I guarantee it’ll make you think differently—and feel better—about the years ahead. More about the book here.

no format!

Age justice requires disability justice—and vice versa.

A terrific special section of today’s New York Times is devoted to the 30th anniversary of the passage of the Americans With Disabilities Act. There is no mention of age or ageism. It would be convenient to attribute that omission to the fact that most older people are not disabled (true but complicated). But you sure wouldn’t know it from the way the media and public health advisories turn the vast and varied 60+ population into “the [frail/vulnerable/dependent] elderly.” And it’s not the real reason. The real reason is that we act as though people with disabilities don’t grow old and olders never become disabled—and an ageist and ableist culture gives us cover.

That has to change. Aging and disability are not the same. But they overlap in ethically and tactically important ways:

There are a lot of us, and our numbers are growing. As modern medicine saves people who once would have died, more disabled people are reaching adulthood and beyond. One out of four American adults has some type of disability. Disability rates rise steeply after age 75—the fastest-growing age cohort. Population aging is a permanent, global, demographic trend. Some impairment awaits us all.

We all face stigma, and we’re all biased. Both olders and people with disabilities encounter discrimination, and prejudice. Many olders refuse to use wheelchairs or walkers, even when it means never leaving home, because the stigma is so great. People with disabilities are as ageist as everyone else. When an acoustic neuroma destroyed most of the hearing in one ear, I caught myself thinking, “At least it’s sexy brain-tumor-deafness, not sad old-person deafness”—making me both ageist and ableist.

Ignoring the overlap between ageism and ableism leaves stigma unchallenged and rules out collective activism. A mandate of the disability justice movement is to stand in solidarity with other marginalized groups, as the Black Panthers did in 1977 by bringing supplies and cooked meals to the over 100 disabled protesters who occupied the San Francisco H.E.W offices for almost a month, and as the Black Lives Matter movement is doing now by supporting the rights of transgender and Indigenous people. “Speak up not only for your own disability, but for invisible disabilities, and disabled people of color as well,” urges activist Alice Wong, the author of Disability Visibility. Speak up, too, for older people with disabilities, who have much to learn from younger pwd about adapting, identity, and pride.

Just as realizing the potential of the disability justice movement means joining forces with age activists, being anti-ageist means being anti-ableist. For most of us—including me, so stay tuned to this blog—that means learning more about disability. Watch Crip Camp and learn about disability culture.  Being anti-ageist also means being anti-racist, which right now means supporting the Black Lives Matter movement. Because achieving equal rights for everyone—everyone!—means ending White Supremacy. Because growing old is a privilege denied to many black, brown, and disabled people. And because it’s all one struggle.

no format!

Breonna Taylor did not get to grow old

Here’s my latest newsletter. Subscribe here. I don’t write them very often, no spam, and it’s easy to unsubscribe.

Breonna Taylor, a Black EMT, was murdered in her bed at 26 years old. Michael Brown was 18. Tamir Rice was 12. Why am I writing about these young victims of police brutality in a newsletter about ageism? Because systemic racism stands between so many black and brown people and long life itself. Because being anti-ageist means being anti-racist. Because, in the words of poet and activist Audre Lorde, “There’s no such thing as a single-issue struggle because we don’t lead single-issue lives.” 

At 17, when I carried a candle across the Potomac River in Washington DC, my home town, to protest the Vietnam War, I didn’t understand that the black liberation movement was fueling massive social change around the world: not just the anti-Vietnam War movement, but the Paris uprisings of May ’68, the disability justice movement (watch Crip Camp), the women’s liberation movement, and the gay rights movement (listen to documentary filmmaker Yoruba Richen explain why none of us is free until all of us are free). I’ve been marching ever since, but for a long time race and class protected me.

I got the sexism memo in my 30s, as I struggled to stay married under patriarchy. In my 50s, afraid of growing old, I woke up to ageism. In my 60s, hearing loss and bone badness brought ableism home. Enter COVID, which has glaringly exposed the intersectional nature of vulnerability itself. Which brings us full circle, as always. The pandemic has hit older Americans hard, but it has hit Black olders the hardest. Systemic racism is fundamental to capitalism and our society is built on it. (Here’s a crash course from author and activist Kimberly Jones on how racism is embedded in the history of the United States.) Achieving equal rights for everyone—everyone!—means ending White Supremacy. Right now, that means supporting the Black Lives Matter movement with our words, our wallets, and our masked and distanced bodies if we can.

We live in a society that outfits policemen in state-of-the-art military gear and hospital workers in garbage bags, where people who diverge from what Lorde called the “mythical norm”—think white, young, male, non-disabled, thin, cisgender, and financially secure—are dying from COVID19 in vastly higher numbers. These things are related. Just as different forms of oppression compound and reinforce each other, activism is intersectional too. When we confront White Supremacy, we not only make the world a better place in which to be Black, we make it a better place in which to be old, to be female, to have a disability, to be queer, and to be poor. It’s all one struggle. If I can learn to cut my own hair, anything is possible—including the revolutionary change that just might be within our grasp. 
With my friend Ardele at an #EldersForBlackLives
protest in front of New York’s City Hall in NYC on June 24th
I show up in person when it’s safe because it makes me feel good; you may not want or be able to, which of course is totally fine. There are tons of excellent books, articles and movies to help us understand racism and how to end it. Here are some starting points from NYTimes columnist Michelle Alexander. Reading isn’t enough. As someone quipped on Twitter, Extreme Weather Study Groups don’t help communities ravaged by hurricanes. Here’s a Guide to Allyship, which quotes author Roxanne Gay:
Black people do not need allies. We need people to stand up and take on the problems borne of oppression as their own, without remove or distance. We need people to do this even if they cannot fully understand what it’s like to be oppressed for their race or ethnicity, gender, sexuality, ability, class, religion, or other marker of identity. We need people to use common sense to figure out how to participate in social justice
It’s our fight too.

no format!

We’re all Old People in Training, whether we know it yet or not

This excerpt from my book ran on TED’s “Ideas” page under the title Rather than identifying as old, young or middle-aged, be an “old person in training” instead. I’ve loved that idea since I encountered over a decade ago (!), although I had no idea how central to my thinking it would become.

Becoming an Old Person in Training allows us to choose purpose and intent over dread and denial and connects us empathically with our future selves, says author and activist Ashton Applewhite.

What’s the best answer to “How old are you?” Tell your questioner the truth — and then ask why it matters. Ask what shifted in their mind once they had a number, and ask why they think they needed to know. The information feels foundational, but it isn’t. We ask partly out of sheer habit, carried over from childhood, when a month was an eternity and each year marked developmental changes and new freedoms.

“The kids drive me crazy asking how old I am,” said 80-year-old Detroit schoolteacher Penny Kyle. “I don’t mind telling my age, but I know on the job it can cause you a problem, so I always say I’m 104.” Ha!

We ask because age functions as a convenient shorthand, a way to contextualize accomplishments and calibrate expectations. It’s lazy, though, and utterly unreliable, and arguably impertinent. A woman who attended one of my talks says she answers the question by retorting, “How much do you weigh?” Scientist Silvia Curado refuses to give her age — not because she wants people to take her for younger but because she refuses to be pigeonholed in a way that she finds “reductive and usually faulty.” Her consciousness makes it a political act. Social worker Natalia Granger offers a radical suggestion: Follow the example of gender-nonconforming people. When asked for your age, identify as “age-nonconforming.”

Author and environmental activist Colin Beavan did something similar when he announced on Facebook that he was “coming out as age queer. I am not comfortable with the roles and stereotypes associated with the age of the body I was born into,” he wrote. “My body’s age is not my age. From now on, I will be identifying as 37.”

I want to be age queer by rejecting not my age but the fixed meanings that people assign to it.

I love the culture hack, but I want to modify it because identifying as 37 (still “young”) is a form of denial. After a back-and-forth, he decided to stop identifying with a specific age. I want to be age queer by rejecting not my age but the fixed meanings that people assign to it. I claim my age at the same time that I challenge its primacy and its value as a signifier.

The habit of wanting to know a person’s age is hard to break. Take the journalistic convention of including ages in newspaper stories. Two stories in the same week — one about a 42-year-old nursing student running for homecoming queen and another about a 91-year-old mayor swindling River Falls, Alabama, out of $201,000 — got me thinking about it. Dolores Barclay, a veteran Associated Press reporter, fielded my question.

“It is just another essential fact to include about the subjects we cover. It’s part of the ‘who’ in reporting,” Barclay responded. “Age is often relevant to certain stories as well. For example, if we write about a ‘senior citizen’ or ‘older person’ who takes her first skydive, does the story have more impact if the subject is 70 or if she’s 99? Or, if we’re profiling the accomplishments of a musician who has had an illustrious and amazing career, don’t we want to know how old he is? What if he’s only 24, but reading the story we might think he’s 60?”

Obviously, the subject’s age belongs in obituaries and profiles of child prodigies but I believe its reflexive inclusion in other stories is nothing but a bad habit. In terms of it being a necessary part of the “who” of a story, race is no longer an obligatory part of the “who” — unless the story is about race relations. Why should age be any dif­ferent? There are plenty of ways to clue readers in the rare event that it’s relevant to the story. A little confusion could rattle assumptions about what people are capable of at a given stage of life or what they have in common across age divides, which would be all to the good.

To avoid reducing people to labels or medical diagnoses, disability etiquette prescribes “people first” language: instead of “mentally ill,” saying “people with mental illness;” instead of “autistic” or “epileptic,” saying “people who have autism” or “people who have epilepsy;” instead of “wheelchair-bound” or “confined to a wheelchair,” saying “wheelchair users;” and so on. The disability is a characteristic of the person; it does not define them.

A lot of people are in the grips of a cruel paradox: They aspire to grow old yet they dread the prospect.

So, here’s yet another thought experiment: How about learning from the disability rights movement and conceiving of ourselves as “people with age” instead of as X- or Y-year-olds? Age becomes just another attribute, like being a good speller or a Filipino or a Cubs fan. People could “have years” — just as people with dementia “have trouble thinking.”

Age needn’t set apart, nor be set apart from other identifiers. Person first, as retired psychotherapist Bill Krakauer discovered when he started taking acting classes. “So here are these bunch of kids and they see an old guy, right? After a while it quiets down. It takes a few weeks, but everybody forgets. I stop looking at them like young people, and they stop looking at me like an old guy and we’re all just people.”

My final thought experiment: Think of yourself as an Old Person in Training. In 2008, I heard geriatrician Joanne Lynn describe herself as an Old Person in Training, and I’ve been one ever since. I know I’m not young, I don’t see myself as old, and I know a lot of people feel the same way. They’re in the grips of a cruel paradox: They aspire to grow old yet they dread the prospect. They spend a lot of energy sustaining the illusion that the old are somehow not us.

Becoming an Old Person in Training bridges the us/them divide and loosens the grip of that exhausting illusion. It acknowledges the inevitability of oldness while relegating it to the future — albeit at an ever-smaller remove. It opts for purpose and intent over dread and denial. It connects us empathically with our future selves. As Simone de Beauvoir put it: “If we do not know who we are going to be, we cannot know who we are: Let us recognize ourselves in this old man or in that old woman. It must be done if we are to take upon ourselves the entirety of our human state.”

In a world increasingly segregated by race and class as well as by age, reaching over those divisions to acknowledge the one path we’ll all travel is a radical act. It means ditching preconceptions, looking at and listening carefully to the olders around us, and re-envisioning our place among them. It means looking at older people and not past them, remembering they were once our age, seeing resilience alongside infirmity, allowing for sensuality, and enlarging our notion of beauty. It means thoughtful peeks through the periscope of an open mind at the terrain we will someday inhabit.

Becoming an Old Person in Training does take imagination, however. In her book A Long Bright Future: An Action Plan for a Lifetime of Happiness, Health, and Financial Security, psychologist Laura Carstensen describes the importance of generating realistic, humane visions of our future selves — what we’ll want to be doing and be capable of — and embarking on the tasks and changes and sacrifices that will get us there. “If we can’t picture ourselves teaching, laughing, loving and contributing to society when we’re 90 and 100, then good luck is about the only thing that will get us there,” she writes.

Becoming an Old Person in Training is a political act, because it derails this shame and self-loathing. It undoes the “otherness” that powers ageism (and racism and nationalism).

As an Old Person in Training, I see the 90-year-old me as withered and teetery but also curious and content. Envisioning her won’t make it happen, but I sure can’t get there without the aspiration. It means working against the human tendency to underestimate how much we’ll change in the future. Rich, complex stories about the past tend to yield vague, prosaic projections of a future in which things stay pretty much the same. Maybe that’s because the unknown breeds unease or because predicting the future is more difficult than reminiscing or because the task holds less appeal in a youth-centric society.

The consensus from people over 80 is that young people worry way too much about getting old, so the earlier we make this imaginative leap, the better. The sooner this lifelong process is stripped of reflexive dread, the better equipped we are to benefit from the countless ways in which it can enrich us. Some people are born with this awareness, and so have longer to develop the capacities that will serve them well later in life, capacities such as the ability to keep making new friends, to value internal resources, and to be able to let go, says writer and medical sociologist Anne Karpf. She also notes the values most admired in the industrialized world — high personal and economic productivity — do little to help us age. We would do both ourselves and the planet a favor, she observes, if we reject those values for more humanitarian and communitarian ones.

Becoming an Old Person in Training makes it easier to think critically about what age means in this society and the forces at work behind depictions of older people as useless and pathetic. Shame can damage self-esteem and quality of life as much as externally imposed stereotyping. Becoming an Old Person in Training is a political act, because it derails this shame and self-loathing. It undoes the “otherness” that powers ageism (and racism and nationalism). It makes room for empathy and action. It robs the caricatures of crone and geezer of their power and frees us to become our full — our ageful — selves.

I may be jumping onto podiums instead of out of airplanes, but I’m not running away from aging. That sets me apart from the aspirational supergeezers — people who want to be part of the smattering of octogenarian CEOs, nonagenarian performers and centenarian diploma-earners. The media loves ’em, but placing them on pedestals distracts from the social and economic factors that shrink the worlds of most older and disabled people. My attitude also sets me apart from an awful lot of other “aging experts” who are invested in the opposite: a deficit model of aging (helping the frail and needy age). We’re all Old People in Training, whether we know it yet or not, and our numbers will swell as we reject demeaning stereotypes and claim our aging selves.

Excerpted from the new book This Chair Rocks: A Manifesto Against Ageism by Ashton Applewhite. Copyright © 2019 Ashton Applewhite. Reprinted with the permission of Celadon Books, a division of Macmillan Publishing, LLC.

Watch her TED talk now:

no format!

no format!

The pandemic isn’t making ageism worse. It’s exposing it—and that’s a good thing.

Image courtesy of NPR

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.

no format!

6 reasons to watch Crip Camp

Campers at Camp Jened, as seen in Crip Camp. 
Steve Honigsbaum/Sundance Institute

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.

no format!

Jeopardy for Older Americans: Ageism in Colorado’s Crisis Standards of Care

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.)

TIER 1

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.

TIER 2

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

TIER 3

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.”

no format!

Deciding for ourselves

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