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. 

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. 

Why concert lighting is an accessibility issue

About four years ago, in July, 2017, I went with a friend to see Ghost at the Warfield in San Francisco. I was really looking forward to the show, and had picked out a seat in the balcony where I could enjoy myself without getting jostled by moshers or wearing myself out by being on my feet for several hours. 

As we got inside, I noticed small signs around the venue, warning people that the performance would feature strobe lights, and anyone with seizures triggered by flashing lights should be aware. I don’t have seizures, but I do have migraines, and they’re often triggered by bright, direct light, including strobe lights. Even though I did my best to shield my eyes from the strobes, about halfway through the show, I felt a migraine coming on. Pain burned through my head, neck and shoulders, and I started to feel nauseated. I took my meds (ibuprofen and maxalt) and retreated to the women’s lounge, where I could still hear the band but couldn’t see the stage lights anymore. 

I’d spent $40 or $50 to see a band, and got half a show and a migraine instead. If I’d known about the strobes ahead of time, I might have skipped the gig and saved my money. Now imagine I’d had a seizure instead.

An acquaintance of mine works in lighting, mostly for tech conferences but occasionally for theater and concert performances. After the Ghost show, I had a number of questions that he answered for me. I came away more informed, and more frustrated, than I’d been before. Here’s why: 

• Venues don’t know ahead of time which bands are going to use lighting that might cause problems for audiences with seizures and/or migraines. 

• Because they don’t know ahead of time, they can’t warn people at the time of ticket sales. 

• That means a certain number of concertgoers either have to bail after they get to the venue, hide out somewhere where they can’t see the lighting, or tough it out and hope their condition won’t be triggered. I don’t know if you can get a refund for these kinds of situations (and that’s assuming people didn’t travel a long way to see the show, rent a hotel room, etc.).

• There are no regulations barring bands from using lighting that can induce seizures and/or migraines. 

This is an accessibility issue. In any given audience at the Warfield (capacity: 2,300), there’s likely to be an average of two people with light-sensitive epilepsy, and another 200 or so will have migraines caused by photosensitivity. Bands either need to warn their venues (and audiences) ahead of time that their light shows could trigger seizures or migraines, or stop using lighting that provokes these conditions. 

Have you ever had a seizure or migraine triggered by the lighting at a show? What did you do about it?

Coming Out: Fibromyalgia

“When we feel vulnerable sharing something with someone, I think it’s because we are actually judging or shaming ourselves ... And then we’re afraid the other person will as well. We’re afraid they will confirm our worst fears about ourselves. That’s why it’s scary. We fear their rejection because we’re really fearing our own rejection of ourselves.” —Kara Loewenthiel

“The reward for conformity is that everyone likes you but yourself.” —Rita Mae Brown

I have fibromyalgia.

I was formally diagnosed a couple of years ago, but I’ve been living with it in some form since my early 20s. For years I thought it might be something else: rheumatoid arthritis, maybe, or a connective-tissue disorder. The diagnosis surprised me, but over time it has come to make sense. 

The definition of fibromyalgia, as it stands now (the medical world doesn’t really understand it very well yet), is that it’s a neurological condition in which things that shouldn’t hurt do, and things that should only hurt a little hurt a lot. When I injure myself, my body heals but the pain lingers — my nervous system “learns” the pain, then struggles to unlearn it. Fibromyalgia often comes with fatigue, general aches, brain fog, trouble sleeping and other symptoms. For everyone who has it, it’s a bit different. 

This is what it’s like for me: I’m in a little bit of pain every day, somewhere in my body. Often, it’s more than a little pain. Today, it’s focused in a spot next to my right shoulder blade. But I’m achy elsewhere, too — in my shoulders, my arms, my legs, my feet. Sometimes, I also feel like I’m coming down with the flu: my throat and eyes are scratchy, everything aches and I feel like I could sleep for days. I have one or two days like that each month. Even on a good day, my body gets stiff quickly, and standing up when I’ve been sitting a while means walking gingerly until my muscles joints loosen again. 

Fibromyalgia flares often come on when I overdo it, physically or emotionally. If I spend an hour gardening or take a long walk, or even if just have a night of bad sleep, I’ll have flu-like symptoms the next day. It’s similar if I get really upset or stressed out by something. Sometimes it’s worth it — worth it to be fully alive and active in my body or in my emotions, even though I’ll likely feel lousy the next day. But generally I try to do things in moderation. 

To look at me, you wouldn’t guess anything was amiss. This is what it means to be invisibly disabled.

It might sound like I’d be miserable all the time, but I’m not. There are bad days, and there are days when I grieve or feel like I’ll never feel good again, but they are pretty rare. This is my baseline and I’m pretty used to it, just like you’re used to yours. 

The most common treatments for fibromyalgia are anticonvulsants like gabapentin and pregabalin, thought to keep the nervous system from overreacting and causing symptoms (they’re also used to prevent epileptic seizures, and to treat shingles pain). I haven’t tried them, largely because I am so sensitive to medications, and these ones are notorious for being difficult to get used to (and more difficult to come off of if they don’t work). 

Instead, I take low doses of ibuprofen, which helps keep my baseline pain levels down. On bad days I have a whole menu of things to try: stretching, foam rolling or rolling against a pinky ball, THC or CBD tinctures, cannabis salves, heating pad, a bath with epsom salts, massage, chiropractic care, a nap. I’ve tried plenty of other things that don’t help, and I’m not looking for any advice. The best preventatives are good sleep, lots of hydration, and not too much (or too little) exercise or stress. But there’s only so much control I have — which is to say, not much. I’ve spent a lot of time coming to terms with the idea that some days I’ll feel like crap, but they will pass. 

The causes of fibromyalgia are still not well understood, but some research points to chronic stress, especially the kind of stress we may carry if we’ve experienced adversity and trauma before we become adults. It’s nice to see this research making its way into mainstream publications after doctors not taking fibromyalgia seriously for decades.

I’ve kept this to myself for a long time, not wanting to be treated as different or less capable — or conversely as some sort of inspiration, achieving so much in the face of adversity. Ultimately I can’t control what others think, and the older I get, the less energy I have for hiding.