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.
