Elder Care Should Be Collective. The Atomization of Aging Is a Giant Mistake.

For twelve years starting in 1982, my partner and I in San Francisco joined with two friends in Seattle to produce Lesbian Contradiction: A Journal of Irreverent Feminism, or LesCon for short. We started out typing four-inch columns of text and laying out what was to become a quarterly tabloid on a homemade light table. We used melted paraffin from an electric waxer to affix strips of paper to guide sheets the size of the final pages.

Eventually, we acquired Macintosh computers, trekking to a local copy shop to pay 25 cents a page for laser-printed originals. We still had to paste them together the old-fashioned way to create our tabloid-sized pages. The finished boards would then go to a local commercial printing press where our run of 2,000 copies would be printed.

This was, of course, before ordinary people had even heard of email. Our entire editorial process was mediated through the U.S. Postal Service, with letters flying constantly between our two cities. On the upside, through 12 years and 48 issues, we only had to hold four in-person meetings.

All of which is to say that I’m old. That fact — and recent events in the lives of several friends — have brought to mind the first article I ever published in LesCon: “Who’s Going to Run the Old Dykes’ Home?” It’s a question that’s no less pertinent today, and not just for lesbians. My worldview was more parochial back then; I naively believed that someone — the state or their families — would look out for heterosexual elders, but that we lesbians were on our own. It turns out that we — the people of this country — are all on our own.

Playing Aging Roulette

These days, my partner and I seem to be doing a lot of elder care. Actually, I’ve long been a source of tech support for the octogenarian set, beginning with my own father. (“OK, you’re sure you saved the file? Can you remember what name you gave it?”) With our aging friends, we also help out with transport to doctors’ offices, communications issues (with landlines, cell phones, and the Internet), and occasionally just relieving the loneliness of it all.

In recent months, elderly friends of ours have faced losing their housing, their spouses, their mobility, or their cognitive abilities. I find it terrifying and ache because there’s so little I can do to help them.

I shouldn’t be surprised, but I’m daily reminded that getting older can indeed be frustrating and frightening. It pains me to know that my bones are weakening, that I don’t hear as well as I used to, that my skin’s drier and wrinkling, that my once familiar face in the mirror is growing ever stranger. I’m lucky that — like my father who used to say, “After 70, it’s all maintenance” — I’ve managed to maintain a fair amount of brown hair on my head. I especially hate the way words that used to leap down my tongue in merry cadence now frequently lurk sullenly in the backwaters of my brain.

In a piece about our aging political class, Robert Reich, secretary of labor for President Bill Clinton, has written charmingly about the “diminutions” that come with growing older and his own decision to stop teaching after decades of doing so. His take on anomic aphasia is similar to mine. He laments his trouble remembering people’s names, noting that “certain proper nouns have disappeared altogether. Even when rediscovered, they have a diabolical way of disappearing again.” I know what he means. For some years now, whenever I want to talk about cashew nuts, all I can initially think of is “carob.” Some devious gremlin has switched those words somewhere in the card catalog of my brain.

But even as I grieve for capacities lost and departing, I’m still not ready to come face to face with the only true alternative to aging: not some tech bro’s wet dream of eternal life, but the reality of death. I’m opposed to dying and, had the universe consulted me, I’d have left mortality out of its design completely.

No One Else Is Going to Do It for Us

Written more than 40 years ago, parts of my piece “The Old Dykes’ Home” are flat-out embarrassing now. Getting old seemed so strange and far off before I was even 30. When I imagined being aged then, I think it was with the piercing sorrow of Paul Simon’s song “Old Friends/Bookends”:

“Can you imagine us years from today
Sharing a park bench quietly?
How terribly strange to be seventy”

In other ways, my article was depressingly prescient about just how much this country would expect aging people to shift for themselves by the time I reached that strange period of my own life. Not only old dykes, but pretty much anyone who isn’t affluent, can find that old age brings economic desperation.

Yes, U.S. citizens and permanent residents over 65 can get medical attention through Medicare, but the standard program only covers 80% of your bills. Beginning in 2006, we gained access to some prescription drug coverage, but that requires sifting through an ever-changing menu of medications and the ability to predict today what meds you might need tomorrow.

Most people who live long enough will receive some monthly income from Social Security, although the amount depends in part on how much they were able to earn during their working lives. But we’re constantly staving off attacks on Social Security, including attempts to privatize it, reduce benefit amounts, or increase the age at which people can collect because Americans are living longer. That last proposal, as economist Paul Krugman has pointed out, is really another way of penalizing low-wage workers. As he wrote,

“Life expectancy has indeed risen a lot for the affluent, but for the less well-paid members of the working class, it has hardly risen at all. What this means is that calling for an increase in the retirement age is, in effect, saying that janitors can’t be allowed to retire because lawyers are living longer. Not a very nice position to take.”

Suppose the disabilities of age mean you can no longer safely live in your own home. Well, you’re on your own. Unless you can afford to move to some kind of assisted-living facility, you’re in real trouble. Your main alternative is to spend down most of what you own, so you qualify for the pittance that your state Medicaid program will pay a (most likely for-profit) nursing home to warehouse you until you die.

The threat of being old and unhoused is very real. A recent major study of unhoused people in California found that almost half of them are over 50 and 7% over 65. As housing costs continue to rise, we can only expect that more old people will find themselves on the street.

Back then, I wrote that, under capitalism, we could expect the “owners of wealth” to do very little for people who are no longer creating profits through their labor — or indirectly, by doing the work “to make it physically and emotionally possible for the paid laborers to go out in the world and work one more day.” Why, after all, should capital take any interest in people who are no longer a source of profit?

These are the people — old, disabled, permanently unemployed — who, according to the political philosopher Iris Marion Young, experience a particularly sinister form of oppression: marginalization. “Marginalization,” writes Young, “is perhaps the most dangerous form of oppression. A whole category of people is expelled from useful participation in social life and thus potentially subjected to severe material deprivation and even extermination.”

There were some other missing pieces in that article. I left out the fact that it’s easier to justify low pay for the art (and science) of caregiving when most of its practitioners are women. I failed to envision caretakers organizing on their own. I never imagined that, decades later, a National Domestic Workers Alliance would arise to represent the interests of the poorly paid, disrespected workforce of immigrants and women of color who largely do the work of caring for the aged in this country.

I had just lived through an episode in which on the bus to work I suddenly fainted from pain caused by a herniated disk in my back. I found myself lying on my bed for several months recovering while living on a monthly welfare check of $185 and food stamps. Still, the lesson I drew was that the solution to caring for people with chronic disabilities was what had then worked for me: drawing on a community of volunteers, a roster of almost 30 women who took turns shopping for groceries, doing my laundry, and ferrying me to doctors’ appointments. Why couldn’t that work for everyone?

That network of support existed, however, because I belonged to a lesbian community self-consciously constructing a parallel society tucked inside the larger city of Portland, Oregon. It was packed with institutions like a women’s bookstore, a drop-in community center, a women’s mental health project, and a feminist credit union, among others. I acted with a women’s theater company and, at times, worked as a secretary at a women’s law cooperative.

In reality, though, we weren’t nearly as independent as we thought we were. Most of those institutions were staffed by women paid through the Comprehensive Education and Training Act, passed during the presidency of Richard Nixon and continued under Jimmy Carter. When Ronald Reagan and his new brand of Republicans took over in Washington in 1981, those salaries disappeared almost overnight — and with them, most of our community’s infrastructure.

So, my answer to the problem of aging then was to endorse an ethic of volunteerism rooted in specific communities, like our lesbian one. “Feminists,” I wrote, “are rightly uneasy about asking each other to perform any more unpaid work in our lives than we, and centuries of women before us, have already done.”

Nevertheless, I argued, “the truth is… no one is going to pay us to take care of each other… and we can’t afford to believe the capitalist and patriarchal lie that we are cheating each other when we ask each other — even strangers — to do that work for free.”

In retrospect, it seems clear to me that I was then inching my way toward an ethos that could free the project of caring for each other from the claws of capitalism. But I was naïve about the amount of time and energy people would be able to spare outside of their day’s labor — especially as real wages were about to stagnate and then begin to fall. I didn’t imagine a time to come when people without much money would need to work two or even three jobs just to get by. I didn’t think, as I do now, that it would be better, instead, to focus on raising the status and pay of caring work.

Even back in the 1980s, however, I recognized the limits of volunteerism. I knew that I’d been lucky during my period of temporary disability. I was an outgoing person with quite a sizeable set of acquaintances. With a reasonable levity of spirit and a dependable store of gossip, I knew then that I could make taking care of me relatively pleasant.

But I also knew that no one’s survival should depend on having a winning personality. Instead, as I wrote at the time, we needed to “develop simple, dependable structures to serve those among us who require physical care.”

How hard could that be, after all? “A file of volunteers and a rotating coordinator could do the job,” I wrote then. Here, too, I was more sadly prescient than I even realized. In recent years, the market for aging care has indeed found a way to commercialize volunteer efforts like the ones I imagined in the form of Internet-based options like Lotsa Helping Hands and Mealtrain.

On Our Own?

My point back then was that, as lesbians, we were on our own. No one was going to run the Old Dykes’ Home if we didn’t do it ourselves. (Perhaps I should have foreseen then that someone might indeed run it, if they could make money doing so!) I figured we had 10 to 15 years to develop “formal networks of support to deal with illness and disability,” because eventually each of us would need such structures. We lesbians would have to look out for ourselves because we lived then “on the edges of society.” I didn’t realize at the time that we shared those edges with so many other people.

Building volunteer structures was, I thought, just the short-term goal. The longer-term project was something much more ambitious: to build “a world in which the work of caring for each other happens not at the fringes of society, but at its heart.”

I still believe in that larger goal, and not because it’s a lovely fantasy, but because it’s a response to a fundamental reality of life. It’s a fact that human beings, like all beings, live in a web of interdependence. Every one of us is implicated, folded into that web, simultaneously depending on others, while others depend on us. The self-reliant individual is an illusion, which means that constructing societies based on that chimera is a doomed enterprise, bound in the end (just as we’ve seen) to fail so many on whom — though we may not know it — we depend.

Aging really is a roulette game. My partner and I are gambling that we will keep our limbs, organs, and minds hale enough to, as they say, “age in place.” We plan to stay in the house we’ve occupied for more than 30 years, in the neighborhood where we can walk to the library and the grocery store. We don’t plan to get Parkinson’s or Alzheimer’s or congestive heart failure or (like yet another friend) take a life-changing fall down a flight of stairs. Having somehow forgotten to have children (and never wanting to burden even our hypothetical offspring in any case), we’re planning to take care of ourselves.

Talk about hubris!

The truth is that we have much less control than we’d like to believe over how we’ll age. Tomorrow, like so many of our friends, we could be staring at the reality of growing old in a society that treats preparation for — and survival during — old age as a matter of individual personal responsibility.

It’s time to take a more realistic approach to the fact that all of us lucky enough to live that long will become ever more dependent as we age. It’s time to face reality and place caring for one another at the heart of the human endeavor.