Doing book events as a disabled and neurodivergent person

When my book “San Francisco’s Forgotten Cemeteries: A Buried History” came out at the end of August, I was lucky to be able to do lots of events around the city to promote it. Over the course of two months, I had six “in conversation”-style events and three readings, plus a couple of podcast recordings, and most of them were in person. 

Most authors will tell you that the book-publicity cycle is exhausting and grueling, even when it’s also a lot of fun — after all, you’re getting to talk in depth about a topic you’re really passionate about. But I also have chronic pain/illnesses and sensory sensitivities (and I’m an introvert), so I knew this process would probably be very hard on me. 

Before planning my schedule, I paid a lot of attention to what other chronically ill and/or neurodivergent authors have advised, and I did my best to create a schedule that would work for me. I’d like to share a little of what I learned ahead of time, what I did, and how it went. 

Johanna Hedva is an artist and musician, and the author of several books, as well as an outspoken advocate for accessibility and disability justice. Their disability access rider, which creates an accessible space for themself as well as for their audience, can be found here. 

A couple of items in Hedva’s rider stood out to be as potentially very useful in my circumstance. They write, “I require at least 48 hours after arriving to acclimate before I can participate in any public events. I’ll need to fly home the day after the event.” I wasn’t flying anywhere, but this tipped me off to the idea that I should try to book a day of recovery/rest after each event, where possible. In practice, it turned out that I really needed to rest the day before (and day of) the event, plus two days after. 

Ultimately, I tried to schedule my events about a week apart. On top of my personal health needs, I’m a partner and a mom (of a kid who started high school two weeks before my book launched!), and I needed to stay on top of those responsibilities as well. 

For the most part, that schedule allowed me enough time between events to recover and feel ready for the next one. It also allowed me, in one case, to take on an additional event that was very worthwhile, in terms of getting word out about the book. On the downside, I wound up with three events that week — and it was the same week my cat had to be hospitalized after eating something toxic. It was rough!

Hedva also writes, “I require all of the below to be confirmed and agreed upon by contract at least three weeks before the event takes place. Trust me, the more time there is to work out all the logistics, the better.” Inspired by this, I set up my event schedule fairly far in advance, so that once I was in the thick of things, I would know where to show up and when, and not have to worry about logistics anymore. One event was still in flux up until about a week beforehand, and another popped up just a couple of weeks before it happened. That was an extra cognitive burden, but having my schedule mostly set far in advance really helped. 

For one event, I had been to the venue before and knew that the overhead LED lighting might give me a migraine. I asked the event coordinator if they could work with me to lower the lighting, and they did. 

Another helpful guide for me is the one that author Katherine May (“Wintering,” “Enchantment”) put together, particularly to protect her needs as an autistic person. I find almost all of her accommodations for online and in-person events to be incredibly helpful for me. 

While I didn’t specifically request any of May’s suggestions from the venues where I appeared, they were important for me to keep in mind as I decided when to show up before an event, whether to mingle or rest beforehand, and so on. Unlike May, I find that showing up a bit early is helpful for me, particularly if I don’t already know a venue well, so that I can get acclimated to the space before other people begin arriving. 

Even with all these plans in place, I was still exhausted for a day or two after each event, I dealt with some brain fog and lack of executive function after events, and my throat was usually sore from reading and talking more than usual. In a couple of cases, I really should have asked for a chair at the book-selling table, so that I could sit while selling books and talking to readers. If I stand for long periods, I often get light-headed and my legs will hurt, but I sometimes got so caught up in things that I wasn’t paying attention to my body. 

And, after all that, it took about a month for me to get back to baseline energy levels, where I felt like I could do new work again. 

May writes, “Not everyone will be able to ask for accommodations like these — and also … I won’t always get them, despite asking. But I think it’s important to use my relative privilege to ask anyway. Hopefully it will begin to raise awareness amongst journalists and organisers of the kind of needs autistic people have.” 

I wish that I felt like I could have gone further and requested the kinds of accessibility that Hedva and others require, such as sign language interpreters online and in person, and live captioning for online events. But none of my events were paid, and only one was ticketed, to cover the cost of renting the venue. And currently, most venues don’t have the costs of interpreters or captioners built into their event budgets. They should, but we’re not there yet.

I’m grateful that I was mostly able to set up a schedule that was sustainable and accessible for me. I hope this is helpful for others who deal with similar differences and limitations. 

Forgotten cemeteries elsewhere

Image: Pacific Sun.

As San Francisco’s Forgotten Cemeteries is finding its way into the world, I’m getting a number of intriguing emails from readers. (Today, I heard from a retired priest who used to work at Mission Dolores, who once helped a man find his great-grandmother’s burial spot. It turned out to be underneath the archbishop’s parking spot.)

Marin County Farm Cemetery

A week or so ago, someone emailed to ask me about a forgotten cemetery along Lucas Valley Road in Marin County. Even though I used to write about that area for the San Rafael-Terra Linda News Pointer, I didn’t know anything about the burial ground. I hunted around online a little, and came across some articles and a short documentary about this sad and fascinating spot. 

The graveyard belonged to Marin County’s “poor farm,” a workhouse for down-on-their-luck Marin County residents starting in about 1880. There was also a pest house — a hospital for quarantining people with highly contagious, epidemic diseases like smallpox and tuberculosis — on the property. 

Between then and 1955, about 600 indigent people were buried in this place, now an overgrown field with a scattering of bronze markers that bear only an ID number, according to the Pacific Sun. “In January 1881, William Dever’s body was the first to be buried in the cemetery, according to Warner. Dever, notorious for committing robberies and escaping from county jail, died in custody at San Quentin and left no money for his burial,” the newspaper reported. Only in recent years has the county added a sign acknowledging the site, along with a split-beam fence separating it from the surrounding terrain. 

You can learn more about this burial ground by watching “A Silent Legacy,” a brief and compelling film made by two locals, here: 

Hart Island

I grew up in California, so the first time I heard about the indigent cemetery on New York’s Hart Island was from the TV series Pose. In the first episode of Season 2, Pray Tell (Billy Porter) and Blanca (Mj Rodriguez) visit the island to find the grave of a friend who recently died of AIDS. In the 1980s and 1990s, Hart Island took in thousands of people who died during the epidemic. But it wasn’t always a cemetery. 

Hart Island once served as a training ground for the U.S. Colored Troops, as a prisoner-of-war camp during the U.S. Civil War, a quarantine zone for patients with tuberculosis and yellow fever, a drug-rehab center and a site for male prisoners. In 1980 it became New York City’s Potter’s Field, a burial ground for the indigent dead, and more than 75,000 people are buried there now, many of them in mass graves marked by a single number. Thousands arrived during the peak of Covid-19.

Historically, the island was closed to the public, but in recent years its management was transferred from the city’s department of corrections to its parks department, and it’s slated to open up in the coming months. I hope someday I’ll have the chance to visit. 

In the meantime, the Radio Diaries podcast is producing a series about Hart Island, telling the stories of some of the people who are buried there. It’s a moving and sensitive listen. You can check it out here. 

Below, you can get a bird’s-eye view of Hart Island, courtesy of drone footage from USA Today:

Who gets to survive and 'rewild' themselves?

I recently read a book on human “rewilding,” the idea that modern, first-world peoples should learn ancestral survival skills, such as foraging for food, making friction fires, hunting and breaking down animals to make use of meat, bones, skin, building shelter, etc. I’m not going to name the book or the author because I don’t want to seem like I am pointing fingers at anyone in particular, but as a disabled person I came away with a lot of concerns. 

A major theme of the book is that climate change is coming, and it may very well be devastating to modern culture. We will need to have these survival skills, otherwise the human race may not carry on very well. It also argues that the kind of survivalism that’s popular now, the bushcraft in which a solo person, usually a white able-bodied man, treks out into the wilderness on their own and survives for some length of time, isn’t sustainable for human culture. 

Most people can’t do everything needed to survive: build structures, hunt and forage, cook food, make and repair clothing, etc., especially if they’re alone and become ill or injured. Humans have traditionally lived in groups or small villages, where everyone worked together to keep their community afloat. Don’t get me wrong; I have spent hours watching dudes on YouTube dig and build their own shelters in the woods, and part of me wishes I could do that, too. But it’s not a strategy for long-term success as a species. 

But let me go back to the book for a moment. The author briefly mentions that learning and using early-human survival skills might not be available or accessible to everyone, particularly the ill or disabled. They touch on it, but quickly move on. So where does that leave the many of us who rely on daily medications, treatments  and regular access to healthcare? 

Let’s say we go through a climate apocalypse. Absolutely, there are plant medicines that can treat a wide range of illnesses and chronic conditions, but even they can only go so far. What will humankind do to help people who need dialysis, insulin, respirators, cancer treatment, or other life-maintaining medical care? 

Lamar Johnson as Henry and Keivonn Woodard as Sam in HBO’s “The Last of Us.”

I know HBO’s “The Last of Us” is fiction, but I can’t help thinking about the brothers, Henry and Sam, and how Henry became an informant to the federal police in exchange for leukemia treatment for Sam. Maybe our future won’t be so dystopian, but I do wonder if my life, post-climate catastrophe, will involve hoarding meds or taking desiccated pig thyroid and berberine which, I guess, is available in a wide range of plants. And will I have to take care of that on my own, or will the larger culture be willing to provide for its disabled and ill?

Early in the Covid-19 pandemic, disabled and chronically ill folks led the way in terms of masking, socializing online, and mutual aid. Even before most lockdowns started, disability activist Leah Lakshmi Piepzna-Samarasinha put together a guide called “Half Assed Disabled Prepper Tips for Preparing for a Coronavirus Quarantine,” which covered how to store two weeks’ worth of water; how to stock up on shelf-stable foods; power and fuel; sanitation and medical supplies; and much more. Piepzna-Samarasinha released their book “The Future is Disabled” in October 2022, asserting that the future is going to have disabled people in it, no matter what that future looks like. And indeed, after three and a half years of Covid-19 and Long Covid, more people are disabled now on this side of the pandemic. For most people, particularly as we age, disability is an inevitability. 

Disabled and chronically ill people have a variety of survival skills in their tool boxes that non-disabled, non-ill people largely don’t have. So it’s frustrating to see a book on rewilding and survival written with almost no consideration for those perspectives, especially a book written during a global pandemic that disabled 1 in 13 of those who contracted Covid-19.

Regular readers know that I often return to the intersection of disability and access to nature. I wrote about it after I read Robert Macfarlane’s “The Old Ways” early last year. I returned to it, internally, when reading Sharon Blackie’s “If Women Rose Rooted,” in which she describes leaving cities and the corporate world behind in favor of a series of remote homesteads that, while peaceful and restorative, required a lot of physical labor to survive in, and a lot of travel to connect with things only available in urban centers. 

It’s great to talk and write about the ways in which rural life or nature trekking is healing to the human body and mind, but you have to think about who might actually benefit most from having such opportunities — and the many barriers keeping those people, in particular, from accessing such a life. I often wonder if I’d be less chronically ill if I could live in a more remote, woodsy or “natural” environment, but it’d be a gamble finding out. 

Another YouTuber I enjoy a lot is Kalle Flodin, who lives in a cabin in a Swedish forest. He gets his water from a pond on his property (though he has to break the ice in winter), and he’s lucky to be able to grocery-shop nearby and have neighbors who help him with large-scale projects. But his is clearly a physically arduous life of building and maintaining structures, dragging heavy objects up his long driveway when delivery people won’t drive up it, etc. His videos are idyllic and calm, but a recent one asked, “What if More People Lived Like This?” 

Images courtesy Kalle Flodin.

I commented that his lifestyle isn’t available to all of us. One commenter replied to me, “I live with numerous chronic illnesses alone in the forest.” But when I asked them how, they just said “healthy living,” adding that they didn’t need to see doctors very often. They said, “I find that worrying about health makes health worse — so I don't. It simply is what it is. I recommend that approach.” I replied, “Many of us would die if we followed that advice.” And then they said, “If you need a doctor every week, simply live close to one,” which pretty much proved my point. 

The conversation in my mind is joined by other books, including “The Hidden Life of Trees” by Peter Wohlleben. In the book, he writes about the complex ways in which trees communicate with one another, including through underground mycelial networks and chemicals released into the air. The air in forests benefits humans, too; it’s richer in oxygen and it’s cleaner, because the trees act as huge air filters. Some trees release phytoncides, which kill germs in the air and soil. 

It seems as though all humans could benefit from more time among trees, particularly forests or even small, naturally formed woodland areas (trees planted in forestry contexts often can’t communicate with or look out for each other). But I wonder whether natural, wooded environments wouldn’t be especially beneficial to people whose nervous and immune systems are off the rails, whether through trauma/oppression or illness or both. In other words, could disabled and chronically ill people benefit even more from living closer to the land? And if so, how do we open up conversations and skill-building around survivalism and rewilding to include these considerations? 

Is there a way to create rural, nature-filled communities where people can live off the land, not have to trek for miles on aching legs to secure food or water, maintain access to life-sustaining medications and treatments, and meet with a range of medical experts who can diagnose hard-to-pin-down chronic ailments? Is there a way to make the world of rewilding and climate-survivalism truly accessible — and also welcoming to people with different abilities and needs? 

I don’t know the answer. Some ancient humans sacrificed disabled community members — and others with certain medical conditions, or even simple infections, wouldn’t have survived before the advent of antibiotics and other modern treatments. I don’t think we have to go back to that. But I also hope that it won’t just be up to disabled and chronically ill people to determine how we will survive in the future. 

'Forgotten Cemeteries' events + how to support!

I’m happy that, as of this week, “San Francisco’s Forgotten Cemeteries: A Buried History” is out in the world. Its official birthday was Monday (though some preorders were delivered sooner), and I had a fantastic book launch Tuesday night at Green Apple Books on the Park with poet and fellow cemetery nerd Heather Bourbeau. If you missed it, you can watch the replay in the video at the bottom of this post/note.

Many people ask an author: How can I support you and your book? Here are a few suggestions:

1. Buy the book (mine is available through online booksellers and in some SF bookstores, but any bookstore can order it for you). And give one as a gift in the upcoming gift-giving season! Ebook editions are coming soon. There are, unfortunately, no plans for an audiobook.

2. Tell people about the book — in person, on social media, whatever feels most comfortable.

3. Come to events. I’m including a list of my upcoming events below. Come to more than one! They are all designed to be a bit different from each other.

4. Write a review. Especially on Amazon and Goodreads.

5. Request the book at your local library. San Francisco Public Library has some on the way, but if you live outside SF, ask your library to get a copy!

6. Signal boost. If you see me sharing events or other milestones on social media (these will mostly be on Instagram and Facebook), please share in your stories or share with your followers.

Upcoming events:

Tuesday, Sept. 5, 6 p.m. Pacific
”Grotto Nights” with the SF Public Library
”Giving voice to the dead,” in conversation with Roberto Lovato
online, register here

Saturday, Sept. 9, 2023, 5:30 p.m.
Reading at Babylon Salon

Sunday, Sept. 17, 2023, 3 p.m.
In conversation w/Courtney Minick, Here Lies a Story
Bird & Beckett bookstore

Friday, Sept. 22, 2023, 5 p.m.
Reading at the Writers Grotto

Friday, Oct. 13, 5:30 p.m.
in conversation with Julie Zigoris
+happy hour at The Ruby

Friday, Oct. 27, 6 p.m.
in conversation with Loren Rhoads
at the historic San Francisco Columbarium
RSVP/register here

You can keep up to date with any additional events on my book’s page.

A Sinéad-shaped hole in the world

Warning: This post includes mentions of abuse, suicide and abortion.

I must have been 14 or 15 the first time I heard Sinéad O’Connor’s voice, howling and crooning “Mandinka” from our television in the hours after school let out for the day. Her debut album was brave, challenging, feral. I wasn’t sure what to make of her, this bald-headed siren on the screen. But I never forgot her. 

It was through interviews with O’Connor that I learned that abortion was illegal in the Republic of Ireland. Pregnant people who wanted not to be pregnant had to travel, and I knew, even then, that wasn’t possible for many people. When I heard the bare grief in “Three Babies,” in 1990, I assumed that’s what the song was about. (I didn’t learn until much later that it was about O’Connor’s miscarriages instead.)

Even so, that’s what went through my head when I watched her shred her mother’s photograph of Pope John Paul II that night on Saturday Night Live. In that moment, my chest filled with admiration — at her courage, at her willingness to put the Catholic Church in its place. And I was confused when she was crucified for it. 

Many of us didn’t know then that the Catholic Church was lousy with sexually abusive clergy, and many others knew but thought hiding and denying it would keep it from being true. That was the real force behind O’Connor’s gesture, and even after the truth came out decades later, the world failed to adequately apologize to her. 

O’Connor’s music came in and out of my life at key moments, including in 1997, when she released the “Gospel Oak” EP about a year and a half after my mom’s death. The whole album is a healing balm, in particular the opening song, “This Is To Mother You.” At the time, it felt like an umbilicus nourishing me from beyond the veil. Now, I suspect she wrote it in part for herself, to heal from the abuse she experienced at the hands of her mother when O’Connor was a child. 

That abuse launched O’Connor into her life’s trajectory in so many ways; she went to live with her father at 13, but soon fell into risky behavior, including shoplifting, which landed her in a Magdalene asylum (laundry). Run by Catholic nuns, these institutions claimed to be “reform schools” at best, but functioned as prisons and labor farms for girls and women. 

O’Connor was imprisoned in the An Grianán Training Centre, in northern Dublin, for 18 months. “We didn’t see our families, we were locked in, cut off from life, deprived of a normal childhood,” she told the Irish Times in 1993. “We were told we were there because we were bad people. … “We were girls in there, not women, just children really. And the girls in there cried every day.” 

That experience contributed to her SNL protest, she said. “It wasn’t the only reason, but it was one of them.” The last of the Magdalene laundries in Ireland didn’t close until 1996. 

I wasn’t raised Catholic, or even especially Christian. The Irish ancestors I know by name were Protestant, but I know I have others who were Catholic. They found great comfort in their faith, I can feel it in my bones. But they were also hurt by its restrictions, particularly for women and girls; I feel that, too. That’s part of why O’Connor’s protest ripped straight through me. It made me recognize a kindred spirit in her, even before I knew we both endured PTSD and mental illness, and would become mothers to suicidal children. That fury that rose up from her life and DNA? It was in mine, too. 

Sinéad O’Connor was so much more than her trauma and pain. She was a stunning singer, a gutsy and honest songwriter, a woman daring enough to go about the world without her mask. The news of her death tore right through me, and through so many of us, as though we were no more than paper. 

She said and did what so many others were afraid to. She was punished for it, and I can’t help but think she might have enjoyed a longer life if she hadn’t been. Today, the world is a little less brave, a little less honest, without her. 

Edible plants of my childhood

I know it’s been a while since I shared anything here. I’ve been busy with book promotion, freelancing, family stuff, end-of-school-year obligations and health maintenance. It’s been A Time. 

But I’ve been thinking a lot lately about the roots of my foraging knowledge, how I learned about edible plants and trees and herbs. It was sparked, in part, by a conversation with Cailleach’s Herbarium over on Instagram, after they posted about a kind of honeysuckle that we used to have growing on one of our fences in Forestville. I remember sitting by the fence for hours, picking the flowers and pulling the stigma out from the back of each blossom to snack on the drops of flower nectar that would come out. The yellower the flower, the sweeter the nectar. 

On that same fence, blackberry vines grew, bursting with fruit in the late summer. They were great just to eat out of hand, but often, enough ripened at one time to make a pie or blackberry jam. I once made a blackberry galette and brought it to San Francisco, where I interviewed Primus and fed them pie. (Some of them were suitably wary, and others dove right in). 

Nearby, we had a trio of purple-leafed plum trees, which we called cherry plum trees for the size and flavor of their fruits. The cherry plums are delicious if you can catch them at the peak of ripeness; a little early and they’re pretty tart. These trees often grow as street trees in San Francisco, and I’m always surprised to see that people avoid the fruit or say it doesn’t taste very good. 

In late winter, after the rainy season, the ground would become blanketed with oxalis (also known as common yellow wood sorrel). We called it “sour grass,” because the stems and flowers have a refreshing, lemony flavor. As a kid, I chewed on it randomly when the mood struck. As an adult, I’ve made soup and sorbet with it; the soup was good, if time-consuming to harvest the individual leaves; the sorbet never set properly but it tasted delicious, like a herby lemon sorbet. 

We also had more obvious sources of food, like the Gravenstein apple trees I would climb and sit in, eating still-green apples even when my mom swore they’d give me a stomachache. We had nectarine trees and a garden with corn, green beans, zucchini and cherry tomatoes (I was guilty of stealing cherry tomatoes right off the vine). 

I still have fond memories of grazing on cherry plums, blackberries, honeysuckles and sour grass, and wish I’d realized, back then, that the wild garlic and lilacs that grew in our yard were also edible. But the whole experience gave me a kind of confidence about foraging and eating wild plants that still thrills me today. 

My next book: "San Francisco’s Forgotten Cemeteries: A Buried History"

You're looking at Sen. David Broderick's monument (the pointy one in the far distance) in Laurel Hill Cemetery, near where the Trader Joe's on Masonic Avenue  is today. In the foreground is Calvary Cemetery, on the slopes of Lone Mountain. Credit: Lawrence & Houseworth, publisher, Library of Congress.

I’m excited to share that my next book, "San Francisco’s Forgotten Cemeteries: A Buried History,” will be out August 28, 2023, with The History Press. I’ve been working on this book for almost two years, digging through newspaper articles, history books, master’s theses, archaeological documents and photo archives to tell this story, and I’m excited to be able to share it with you all soon.

Here’s the info from my publisher: “San Francisco is famous for not having any cemeteries, but the claim isn’t exactly what it seems. In the early 20th Century, the city relocated more than 150,000 graves to the nearby town of Colma to make way for a rapidly growing population. But an estimated fifty to sixty thousand burials were quietly built over and forgotten, only to resurface every time a new building project began. The dead still lie beneath some of the city’s most cherished destinations, including the Legion of Honor, United Nations Plaza, the Asian Art Museum and the University of San Francisco. Join author Beth Winegarner as she maps the city's early burial grounds and brings back to life the dead who've been erased.”

Caroline Paul, author of the New York Times bestseller “The Gutsy Girl,” writes: “Beth Winegarner’s book traces the history of San Francisco through its forgotten cemeteries: their beginnings, their relocations, and the bodies that often remain. I thought I knew my beloved city but I wasn’t looking deep enough – literally. Unique and eye-opening, I won’t be able to walk these San Francisco streets without wondering what may still be buried just underfoot."

The book includes a foreword by Roberto Lovato, author of “Unforgetting,” in which he writes, “‘San Francisco’s Forgotten Cemeteries’ is an act of restorative justice.”

“San Francisco’s Forgotten Cemeteries” isn’t available for preorder yet, but you can add it to your “want to read” list on Goodreads if you follow this link. I’ll share more news about preorders, events and other news on this page for the book when I can.

What if the mushroom-infected people in “The Last of Us” are the good guys?

Hear me out. 

In the past several years, mushrooms’ mycelial networks have become demystified and celebrated, both as a key component of healthy forests and as an inspiration to human organizers and activists hoping to spark societal change. 

“Mycelium mushrooms have been one of my greatest teachers of trust,” says Nigerian healer Adaku Utah. “The mycelium organism is a dynamic root system of mushrooms that utilizes trust as a mechanism to build and sustain a vast, reciprocal, underground network that connects the roots of trees and plants and skillfully shares nutrients and resources to support the health of the entire ecosystem with which it moves. … The network process also fosters intergenerational relationships that welcome the myriad of ancient wisdom and connections that reside in older trees to benefit younger trees. These mushrooms affirm a commitment to building relationships of trust that encourage all life to bloom.”

[Warning: Spoilers for episodes one through four of “The Last of Us” beyond this point]

Right now, thanks to “The Last of Us,” the excellent video-game adaptation airing on HBO, many of us are feeling uneasy about mushrooms and their subterranean networks. The zombielike monsters in the show are infected by a strain of cordyceps mushroom that forms mycelial connections; brush up against one of these beings, and you alert dozens or hundreds nearby. And these suckers are fast. 

As I write this, I have not played the video game, and I don’t know how the story goes past episode four, “Please Hold My Hand.” But I have a theory: Although the infected humans are depicted as scary and ruthless (except, perhaps, for the one who tried to tenderly kiss Tess), I think the show is trying to tell us that these mycelial connections are superior to how many of the human characters are trying to operate.

In discussing the infected’s connections, podcaster Joanna Robinson points out, “There are no lies in something like that. You see something, I see it. You feel something, I feel it. There are no walls. That is a connected, thriving organism. By contrast, we get the hard shells that are around these various [human] characters because of their trauma.” 

Even before the cordyceps outbreak began in 2003, the United States government (along with those other parts of the world) was dipping its toes into fascism. After 9/11, the U.S. further militarized its police force and stepped up security measures, particularly in airports and government buildings. In the show, after the outbreak, many surviving humans are rounded up in military vehicles and taken to quarantine zones, where they can be punished with public hanging for trying to leave. Many others are exterminated. The QZs are policed by FEDRA guards with rifles. Newly infected people are euthanized and burned. 

In episode three, “Long, Long Time,” Frank accuses his partner, Bill, of mentally living “in a psycho bunker where 9/11 was an inside job and the government are all Nazis.” Bill correctly and hilariously shouts back, “THE GOVERNMENT ARE ALL NAZIS.”

He’s right, but his approach – for the first many years after the outbreak – is to hide out in a real bunker wallpapered with guns, in a neighborhood that he cordoned off with chain-link fences and barbed wire. It’s only when Frank falls into Bill’s trap that Bill realizes he needs connection and companionship more than he needs safety. Many years into their relationship, Bill says, “I was never afraid of anything until I met you,” but he says it with reverence. 

Some viewers felt that “Long, Long Time” was a distraction from the main story, but I think it was trying to tell us something about connection – the human connection that Frank and Bill found in unlikely times, and the connection Joel fights so hard to avoid, even with Tess, who was his romantic companion for many years. Even with Ellie who, he tells her, is no more than cargo.

“The Last of Us” offers glimpses of mycelia-like networks among humans, including the resistance group known as the Fireflies, and the Kansas City community introduced in episode four, but they are few and far between. And even these clusters are walled off, protecting their own against outsiders. The infected humans, by contrast, welcome all comers. Their network is much more democratic, much less hierarchical. 

Patrick Somerville, a writer for “Station Eleven,” another HBO adaptation that takes place in a post-outbreak future, commented on these human organisms on a recent podcast with Robinson and Mallory Rubin. “The people who survive in [‘The Last of Us’] are the people who do away with vertical power structures. And instead don’t have to be the alpha. They’re members of a community, together.”

He reflects this back to the community design in “Station Eleven,” which centers on a traveling theater troupe with a horizontal power structure. “No one has a trump card. You communicate. You humanize each other, remember how everyone’s feeling, and you solve the problem together. Group genius is bigger than individual genius.” 

What Somerville is describing is mycelial network. A true community of equals.

We humans, we’ve been taught that we are superior to animal and plant kingdoms, despite the brilliant ways in which hives of bees, colonies of ants or networks of fungi communicate and work together without conflict or friction. That’s part of where the fear comes in, watching a show like “The Last of Us.” We fear the infected, in part, because they would strip us away from what makes us individual, what makes us separate. 

But, to quote from “Station Eleven,” “To the monsters, we’re the monsters.”

I’m going to be watching “The Last of Us” with compassion and curiosity toward the infected. How about you?

11 books I'm excited to read in 2023

Often, I like to do a recap of what I’ve read and watched over the course of the year, or I try to pick some of my favorites. This year, I find myself more excited by what’s on the horizon, particularly in terms of books. 

For one thing, I’ll have a book of my own coming out in the fall of 2023, about San Francisco’s cemeteries and just how many were left behind in the great relocation to Colma. 

And for another, many of my friends and acquaintances have new books arriving in 2023. In the list below, several of the authors are people I have some connection with, and I’m excited and proud to see these books birthed into the world. It’s by no means a complete list, just some things I’ve been recommending a lot lately.

If you’d like, you can see: 

• What books I read in 2022

• What movies I watched in 2022 (the first row, plus the second row to “The Conjuring”)

• (I watched a lot of TV in 2022, but my tracker doesn’t have a way to show you which programs they were! Still, you can check out my profile here.)

11 books I'm excited to read in 2023:

1. "Ashes and Stones" by Allyson Shaw: “‘Ashes and Stones’ is a moving and personal journey, along rugged coasts and through remote villages and modern cities, in search of the traces of those accused of witchcraft in seventeenth-century Scotland.” (January)

2. “‘You Just Need to Lose Weight' And 19 Other Myths About Fat People," Aubrey Gordon: “In ‘You Just Need to Lose Weight,’ Aubrey Gordon equips readers with the facts and figures to reframe myths about fatness in order to dismantle the anti-fat bias ingrained in how we think about and treat fat people.” (January)

3. "Hood Vacations," MJ Jones: “Michal “MJ” Jones’ debut ‘Hood Vacations’ is a rhythmic & quiet rumbling—an unflinching recollection of Blackness, queerness, gender, and violence through lenses of family lineage and confessional narrative.” (January)

4. "Don't Fear the Reaper," Stephen Graham Jones: “Four years after her tumultuous senior year, Jade Daniels is released from prison right before Christmas when her conviction is overturned. But life beyond bars takes a dangerous turn as soon as she returns to Proofrock. Convicted serial killer Dark Mill South, seeking revenge for thirty-eight Dakota men hanged in 1862, escapes from his prison transfer due to a blizzard, just outside of Proofrock, Idaho.” (February)

5. "Womb: The Inside Story of Where We All Began" by Leah Hazard: “​​A groundbreaking, triumphant investigation of the uterus—from birth to death, in sickness and in health, throughout history and into our possible future—from midwife and acclaimed writer Leah Hazard.” (March)

6. “Enchantment,” Katherine May: “Craving a different path, May begins to explore the restorative properties of the natural world—from a pebble in the hand to the humbling effects of the sea, the pleasure of the ground beneath her bare feet to the magic of a moon shadow. Through deliberate attention and ritual, she finds nourishment and a more hopeful relationship to the world around her.” (March)

7. “Cacophony of Bone,” Kerri ni Dochartaigh: “Cacophony of Bone maps the circle of a year—a journey from one place to another, field notes of a life—from one winter, to the next. It is a telling of a changed life, in a changed world—and it is about all that does not change. All that which simply keeps on—living and breathing, nesting and dying—in spite of it all. When the pandemic came time seemed to shapeshift, so this is also a book about time. It is, too, a book about home, and what that can mean.” (April)

8. "Deep as the Sky, Red as the Sea," Rita Chang-Eppig: “For readers of ‘Outlawed,’ ‘Piranesi,’ and ‘The Night Tiger,’ a riveting, roaring adventure novel about a legendary Chinese pirate queen, her fight to save her fleet from the forces allied against them, and the dangerous price of power.” (June)

9. “All the Right Notes,” Dominic Lim: “Quito Cruz might be a genius piano player and composer in New York City now but it doesn’t mean that he’s any closer to his Broadway dream. Although Quito knows what the problem is. Or rather who. Because ever since that night in college—with pretty-boy jock Emmett Aoki—his inspiration has been completely MIA. Now Quito’s dad wants him to put on a charity performance in his hometown. And there’s one hella big string attached: convince Emmett—now one of Hollywood’s hottest celebrities—to perform.” (June)

10. “I Would Meet You Anywhere,” Susan Ito: A memoir, told through connected essays, about growing up as a biracial (Japanese and European) adoptee. (Fall)

11. “Right Hand,” Natalie Zina Walschots: The sequel to “Hench:” “A sharp, witty, modern debut, ‘Hench’ explores the individual cost of justice through a fascinating mix of Millennial office politics, heroism measured through data science, body horror, and a profound misunderstanding of quantum mechanics.” (Fall)

And, if you’d like to see everything that’s currently on my “to-read” list, you can view that here.

Dreaming of an accessible world

In their newest book, “The Future Is Disabled,” Leah Lakshmi Piepzna-Samarasinha asks readers to dream up what a fully accessible world would look like for us. I’ve been thinking about that a lot in the weeks since I read this fantastic book, but have also found myself reluctant to write it all down. First off, it’s a LOT. And there are things that would make the world more accessible for me but would make it less accessible for some people. And I’ve had a lifetime of people calling me “high maintenance,” or saying I’m asking for too much. When I think about making a list like this, my stomach clenches and hurts. But I’m going to try it anyway. 

Big picture: 

• End fat-shaming/fatphobia. 

• End misogyny and all of its offshoots (transphobia, homophobia). 

• End ableism and disableism.

• End racism. (We all suffer because of it!)

• Make it possible to work part-time and earn enough money to be self-sufficient. Or establish universal basic income that’s enough to live on.

• Make wide-ranging medical care, both physical and mental health care, as well as dental and vision care, free to the public. 

• Make sure doctors have time to listen to patients, and to respect their patients’ perspectives. 

• Make it possible for people to live in rural/natural environments but still get all their needs met. 

• Efficient, comprehensive, low-cost public transportation. 

Details: 

• Make almost every environment quiet enough that you can hear a conversation at normal volume, or the sound of a large bird’s wings flapping as it passes overhead. (There could be exceptions for immersive experiences, like concerts, and for emergency vehicles).

• Create lots and lots of places to sit down, ideally with back support. Along sidewalks, on park and hiking trails, on beaches. 

• Lots of opportunities for shade/shelter. At bus stops, along sidewalks, in parks and so on. 

• Make massage therapy cheap, free, or covered by insurance. (But make sure practitioners are paid well.)

• No heavy colognes, perfumes or other scents, especially in enclosed spaces (I’m looking at you, Uber and Lyft) or when trying on clothes. 

• Unscented soap in public bathrooms.

• Public bathrooms would have towels for drying hands, or ultra-quiet air dryers. 

• No beeping, especially vehicles when they’re backing up (gentler noises are OK). 

• One sound at a time. This has been a problem for me in a variety of spaces, but I’m especially thinking of video calls, where someone is speaking while there’s music or clapping or something at the same time.

• Good ventilation. I’ve been in so many indoor spaces in the pandemic where windows were closed and air filters were turned off. 

• Fewer reflective surfaces, especially outdoors. (I am often in pain or can’t see outdoors because of sunlight reflecting off windows or cars.)

• No bright LED or fluorescent lighting, unless it can be filtered/frosted in some way or turned off. 

• Make window shades or curtains available for bright, sunny windows and skylights. 

• Warn theater/concert patrons about bright and/or strobing lights before they purchase tickets. 

• Elevators in every building that has multiple stories.

• All stores: Make it very easy for customers to find what they’re looking for. Visual clutter and bad signage make this difficult. Also, chain stores should all be laid out the same way to make it easier for customers to orient themselves. 

• Restaurants/cafes/etc: Make your ingredients lists readily available for customers with food sensitivities/allergies. 

• Chairs/sitting areas would fit people with a wide range of hip sizes. None of these narrow chairs with arm rests that bruise my hips and thighs. Ow. 

• No walkie-talkies or overhead announcement systems in stores (I’m looking at you, Target, Home Depot, Walgreens, etc). 

• Make sure lines move quickly, or that there are ways for people to sit down if lines are long and slow. 

• Give people options for how they want to be contacted (phone, email, text, etc.) and honor those wishes. 

• Allow people to opt out of group activities/icebreakers that involve speaking aloud, or being physical (dancing, e.g.) in front of others.

• Provide accurate closed captioning on everything. TikTok, Instagram, movies, TV, everything. 

• Provide accurate transcripts for podcasts/radio shows/TV/movies/YouTube etc. 

• Invite me to events at least a month in advance, and then remind me a few days beforehand. 

This is by no means complete, and I might come back and add to it as I think of more. 

Leah’s book also got me thinking about what might be on my access rider for public speaking and events, both online and in person, but I haven’t put anything together yet. For those interested, you can read Leah’s accessibility rider for events here, and fellow chronically ill writer/performer Johanna Hedva’s access rider here.