17.44: Bodies, Why? (Part II: Working Through Disability)
Your Hosts: Mary Robinette, Fran Wilde, C.L. Polk, and Howard Tayler
Let’s talk for a bit about writing while disabled. This can mean anything from scheduling your craft around doctor’s appointments, to learning to operate on a limited budget as defined by your body.
You might be asking “I’m not disabled, so how does this pertain to me?” Well… you’re not disabled currently. Eventually, as we age, we all experience disability.
Liner Notes: Howard tweeted about his experience at the hand clinic.
Credits: This episode was recorded by Marshall Carr, Jr., and mastered by Alex Jackson.
Homework: This is a process homework. Explore your writing space and schedule. Take stock of the tools you have in place to take care of your physical needs while you work—the lighting, your chair, how often you stretch, eat, and hydrate. Then make a list of what you think might be missing.
Thing of the week: One for All, by Lillie Lainhoff.
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Key Points: Working through pain, through marginalization, through it all. Scheduling craft around illness. Physical and mental aspects. What is normal? Pushing yourself is a choice. A diagnosis may help you tap into a community and borrow tools. What are your coping mechanisms?
[Season 17, Episode 44]
[Mary Robinette] This is Writing Excuses, Bodies, Why? (Part II: Working Through Disability).
[Chelsea] 15 minutes long.
[Fran] Because you’re in a hurry.
[Howard] And we’re not that smart.
[Mary Robinette] I’m Mary Robinette.
[Chelsea] I’m Chelsea.
[Fran] I’m Fran.
[Howard] And I’m Howard.
[Mary Robinette] So, this week, we’re going to be talking about writing through disability. Fran, tell us what that means.
[Fran] Well. One of the conversations that has been happening of late is writing while disabled and what that means, particularly for writers who have either previously not talked about disability because they did not want to meet the terrible fate of being told that they shouldn’t or couldn’t do something that they really wanted to do. But also, people are talking a lot more about what it means to be creative and to work through pain, to work through being marginalized, to work through the… All of the attendant… Even just the medical appointments and how do you schedule your craft around doctors, or not doctors, as sometimes the case is, how do you schedule craft around illness. In this day and age of post-pandemic, we are… A lot of us learning more and more about how to operate in the world using different methodologies and different schedules. I think that it’s really important to talk about writing and health in general, but writing and disability in specific, because it can impact both creativity and how your work is scheduled within the profession. So it’s worthwhile talking about that. It’s also important to talk about how, in some cases, different kinds of disabilities can impact how you perceive different things at different times. So we’re going to talk a little bit about pain. We’re going to talk about mental aspects as well. And we’re going to talk about agency, because a disability and autonomy and agency are sort of the same topic a lot of the time.
[Mary Robinette] For our listeners who are thinking but what does it… How is this episode going to be useful to me, I am not disabled. There’s two things that I want to say. One is you are not disabled currently. The second thing is you know someone who is. This will give you a better frame for being a better friend to that person. So…
[Howard] Can I open with an anecdote from… Gosh, I think it was just the day before yesterday. At Gen Con, I drew eight hours a day for four days straight, and cramps, exhausted, bruised, whatever, the interstitial tissues in my hand to the point that I couldn’t hold a pen anymore. This is not the first time I’ve done this, because I’m an idiot. But we decided we’re going to take a week off. Took a week off, it wasn’t getting better.
[Fran] I’m going to… Actually, Howard, I’m going to walk you back on I’m an idiot because you did this because this is your job and this was a choice that you made for what you wanted to do. Which is a legitimate choice.
[Howard] Oh. Yeah. It is. And it’s… I was being humorously self-deprecatory, not genuinely self-deprecatory. If that helps at all. The point is, I went to the hand clinic. Okay? There’s a specialist for hands and elbows and shoulders. I check in on my phone, I get to the front desk, and they say, “Oh, new patient. Here.” They had to be a clipboard with a page full of checkboxes and little fine lines to… “Can you fill this out, please?” I held my hand up and said, “I can’t currently write. No.” She said, “Well. Just do it left-handed.” Now, the rest of the story is me showering myself with praise for not unloading there at the counter. Because I had big thoughts. I did, however, unload on Twitter. But, circling back around, I’m at the hand clinic and they have a clipboard that they expect people to write on. All patients! Hey, if it’s shoulder pain, maybe you’re fine. But if it’s hand pain, it’s not. How was I supposed to work through this? What the nurse said was, “Well, can you just do it left-handed?” So I did it left-handed with a Sharpie and definitely made an enormous mess of it so that they’d have to cope. But me discovering that I needed to get medical care, I was up against a thing, up against a hurdle that was difficult to clear because of the very thing I was trying to get care for. Ouch.
[Mary Robinette] Yep. It sounds like me trying to get ADHD medication. So, Chelsea…
[Chelsea] I had a thing that I wanted to say. That was… It’s to both. Like, this doesn’t apply to the not disabled, and then the idea of the cram where you do a lot of work in a short time, which is not bad. It’s not bad. I’m not going to say that anybody was bad for doing it. But what I want to point out is you don’t know, a lot of people don’t know what low mobility is. Because our culture pushes us to work to exhaustion and calls that normal, and it should not be. Basically, we are always talking about how if you aren’t pushing yourself 110% every day, you’re kind of a chump. No. Let’s do a… Let’s do a [garbled second-degree?] kind of job for a little while and see if this actually balances our lives a little bit better. Because if you are maximum thrust all of the time, you’re going to need a break. If you don’t schedule that leisure, your body will do it for you.
[Mary Robinette] This is why we have supply line, is because…
[Mary Robinette] Of things running at maximum capacity with no room for anything to go wrong. When that happens, when your body is the supply line, supply chain, things, you have some follow-through issues. Yes. Fran?
[Fran] I’d like… I’m like dutifully raising my hand. I really want to second and echo Chelsea’s point about people not knowing what normal really is. This is something that disabled people and able-bodied people can share that experience. In some cases, quite literally. My anecdotal story, lots of people see the braces that I wear on my hands and their silver rings. I am one of those people that firmly believes that accommodations and devices should be allowed to be beautiful. We shouldn’t be trapped in the ugly medical world of gray and plastic. But I wear braces on my fingers. They’re made by Charlottesville Ring Splint Company. They’re outstanding devices for people with rheumatoid arthritis as well as EDS, which is what I have. But when I was being treated for two dislocated shoulders, and I had pinched a nerve in one, I was seeing an occupational therapist. She noticed that I was bracing oddly with my hands, and suggested these rings splints for me. I tried them. I tried a basic model first, and came back in a couple weeks later, and said something is wrong with my hands. She looked at me and she broke out the pins, and she started checking to make sure that I… My nerves weren’t damaged. I said, “No, I can feel that just fine.” She said, “Well, what do you mean? Something’s wrong with your hands?” I said, “Well, I just can’t… They don’t feel right.” She looked at me, and she looked at me again, and she said, “You mean you’re not in pain. Because these braces are supporting your fingers and keeping them from dislocating.” I hadn’t realized that. I hadn’t realized that I had been navigating my entire life, most of my life, especially when I had started drawing and been practicing art, by sensing where my hands were in space by where the pain was. Once I started using the braces, I actually had to teach myself how to draw again because I couldn’t figure out where my hand was related to the page without that pain. So that was one of the things that I… One thing that I considered absolutely normal that turns out was not. At all. That was pretty amazing. The other thing that Chelsea said that Mary Robinette seconded was that aspect of pushing yourself 110%, and something to go with what Howard was saying about working all weekend. We talk about the crunch, we talk about fitting in work. I want to reiterate something that I started to say before, which is that pushing yourself is a choice. A choice that you make. It’s not something that someone can say to a disabled person, “You shouldn’t be doing this because X.” I mean, that’s a conversation between you and your doctor. But in many cases, I will choose to push myself for a goal, knowing that I will then have to rest later. That’s something that I really feel very strongly is a decision that is given to able-bodied people all the time and should not be taken away from disabled people for the same reason.
[Mary Robinette] 100%.
[Mary Robinette] We’re going to pause, having said that…
[Mary Robinette] I am going to ask you to pause…
[Chelsea] [garbled] collapsible [garbled] box right there. Just…
[Howard] Wait. Do I get a nap now? This sounds awesome.
[Mary Robinette] No. No. No. We’re going to pause for book of the week. So no one gets to stop working. We’re just going to work on something else. So, Fran, actually, you have the book of the week this week.
[Fran] I do. It is a fantastic gender bent retelling of the Three Musketeers, called One for All. It is by Lillie Lainhoff. It came out this past spring. It is an NPR favorite book, it has Junior Library Guild’s recommendation. It’s got starred reviews all over the place. This is a disabled author, Lillie Lainhoff, who rewrote and retold the Three Musketeers from the point of view of Tania de Batz, who is 16 and trying to sort through a world while experiencing chronic dizziness, vertigo, and fainting spells that can incapacitate her at inopportune times. Meanwhile, she’s an amazing sword fighter and wants to take her father’s place as a musketeer. So this is just action scenes, great fight scenes, without eliding or erasing disability from an author who is herself disabled. I just think it’s fantastic.
[Mary Robinette] Ah. I’m very excited about this book. I want to read it.
[Mary Robinette] Something that you said before I forced us to go to break was about the idea of trade-offs. So one thing that I have is… And I’ve talked about this some… Is I have an essential tremor. It’s pretty mild. Most of my day-to-day life, it… The way it affects me is that thumb typing on my phone is a disaster. But otherwise, it’s largely invisible. However, I’m also a professional puppeteer. There are styles of puppets that I can no longer do, and I didn’t want to talk about it at all. About having this, because I knew that people were going to write me out of all roles and not trust me to turn things down on my own. But, in addition to that, there’s a medication that I can take that knocks the tremor out. But when I take that medication, my asthma medication doesn’t work. So I have to make a choice.
[Chelsea] Do you want to breathe or move?
[Mary Robinette] Right. Right. Fortunately, I am at a place where I can make that choice and still be functional. But… And still do my job. But that’s not the case for everybody. So when we’re talking about working through disability, there are going to be days where that trade-off between which thing are you going to do, which choice are you going to make, are you going to make kicking your deadline or being able to go and do a thing. Are you going to… What trade-off are you going to make? Also, what trade-offs are people going to make for you?
[Fran] Part and parcel of that is that there is an assumption when you are disabled, especially as a creative, that you have one disability. When many of us work through multiple disabilities. And work with multiple disabilities. I think that’s an important preposition, with. We have found our own ways to make this work for us. This is one of those big your mileage may vary situations where certain things work for us, but might not work for you in the exact way that we’re describing, but it may work for you modified. That’s totally legitimate.
[Fran] But one of the things that I want to talk about is that there are… We’ve talked a lot about physical disabilities, but I do want to talk about mental aspects as well. So I’m going to kick that first back to Mary Robinette, asking if you can talk about both depression and ADHD. Then Chelsea, if you’ll pick up from there, if you would be willing to talk a little bit about anxiety.
[Mary Robinette] So, this starts with what Chelsea was talking and Fran was talking about, is that we have no idea of what normal is. So, I was 45 when I was diagnosed with depression. In hindsight, I’d had it my entire life. But there were so many things that I just thought was… Like, of course, you work really hard and then you… I thought burnout was what was happening to me. Turns out that is not the case. It was in hindsight, it’s like, “Oh, I have always had depression.” So learning how to deal with that as an adult has been fascinating. I realized it by listening, because I was hearing other people talk about it. The other one is ADHD, which I was just diagnosed when I was 50. I am, for those keeping track, I am 53 now. Again, in hindsight, it has always been there. But it also, one of the reasons that I didn’t realize that I had it, is that my dad has it, and has never been diagnosed. My brother has it. My niece, my nephews, all, to varying degrees. Actually, I think my niece does not. But my two nephews do. I just thought that that was the way brains worked and didn’t realize that all of my problems with time management, all of my problems with five different thoughts colliding into my head at the same time, all of my problems with just… Where I cannot work on a thing for unknown reasons, were all tied into the way my brain was built. So, for me, but having a diagnosis is done is that it’s allowed me to tap into a community and borrow other people’s tools. I’ve built my own coping mechanisms over the course of my life. It’s also very clear… It’s like, “Oh, this is why theater works really well for me.” Because you’ve got a short time span, you’ve got urgency. But a lot of what I have been having to learn to do now is figure out ways in which to work with my brain instead of against my brain. Because most of my life has been trying to make my brain fit into the boxes that society has put around it. This is how a brain is supposed to work. What I’m trying to do now is work with my brain. It’s like this is what my brain is good at, this is what my brain is really not good at, learn to maximize that. It’s tricky. But the first part of it is acknowledging that it exists and then [garbled] deeply about it. Sometimes I do hyperfocus on research about that, I’m just going to say.
[Fran] Thank you so much for sharing that, and talking about it in terms of working with, because I think that’s really… It’s helpful to me to hear that from you. So thank you.
[Mary Robinette] Yeah.
[Chelsea] Hi. Okay. So I’m going to talk a little bit about my [garbled] in the Venn diagram because I also have ADHD. But my big thing now is anxiety. So I have all of the ADHD toolbox things. A lot of the reason why I can do [garbled] is because I accept that this is how I do it and there’s nothing wrong with that and I don’t need to fix that. I just need to do it the way that I naturally already do it, and that’s fine. The modifier is that my first impulse for just about everything is fear and the worst case scenario. This is fantastic when I’m writing a plot of the book, but it’s not so great when I need to go to the grocery store.
[Fran] Were we in a conversation once where you had to give someone, not an editor, explicit instructions not to ask you what the worst possible thing could possibly be?
[Chelsea] Yes. Yes.
[Fran] I think about that all the time.
[Mary Robinette] Yeah. I have to…
[Chelsea] If you asked me what is the worst thing that could possibly happen, I will be like, “I will be walking down the street minding my own business when I am suddenly hit by a bus.”
[Fran] I’m not laughing at you, I’m laughing with you, because that was…
[Chelsea] I know. I mean, I said it to be funny.
[Mary Robinette] Yeah. Yeah. I have to tell people, don’t tell me that I can get to this whenever. It’s like, “No. You have to give me a specific deadline. If you tell me get to it whenever you have time, I will never have time. It will not ever happen.”
[Chelsea] Never. Never.
[Fran] Howard, I want to get back to you. Because you are dealing with something right now that is impacting your ability to not only work, but to fill out those important medical forms, and probably hold a very important cup of coffee, and all of these things are not necessarily new, you said you have done this before, but it’s impacting your life right now.
[Howard] It’s… The thing to recognize is that since early 2020, I contracted Covid, and developed what I call LCCFS. It is the chronic fatigue syndrome set of symptoms that some people get with long Covid. It is possible… I’m going to leave the medical explanation as to why for another day. It is possible that that has impacted the healing process in my hand. Because when I push myself too hard at Gen Con, I knew this is going to hurt, I’m going to be miserable, and I’m not going to be able to get any work done until Wednesday, and then I’m going to force myself to rest all the way until next Monday. That is how hard I am pushing myself. Then I came out of Gen Con and realized this hurts a lot more than I was expecting it to hurt. Then I took a week off and realized this isn’t getting better. So the conversation that we have about our coping mechanisms and about our choices, push, but then plan to rest… I got ambushed. I pushed, I planned to rest, and realized, “No. I did some serious damage.” I have a large litany of coping mechanisms. My very favorite one has been a guest on this podcast before. Sandra.
[Howard] Chelsea, when you talk about anxiety, there are things that will trigger anxiety for me. Things coming in via email. Sandra screens my email. She doles out tasks to me based on her understanding of when I’m ready to hear about it.
[Fran] Actually, Howard, that’s a really good segue into the homework this week.
[Howard] Then let’s segue. Because I could talk about Sandra for an entire three episodes, and [garbled] everybody would love it except Sandra.
[Fran] We’d love to hear you. But I’m going to do the homework.
[Mary Robinette] Good.
[Fran] All right. So today’s homework is not writing homework specifically. This is about exploring your writing space and schedule. This is about process, not product. So, for this week, I want you to look at, we want you to look at what tools do you have in place to take care of your physical needs and your physical self while you are writing or being creative. Just as you set up your workspace with a laptop or a pen or a pencil and paper, think about where you work. Is this chair supportive to your posture? Is this a place that has good lighting? Think about how often you stretch. You see a lot of writers shaking their hands out after a couple of hours. This is a good idea for lots of different reasons. But think about how often you stretch. How much you hydrate. Do you have check in points or times or people that you can check in with to see if you might be in physical or emotional pain and not know it? Just take stock of what you have and then take stock of what you would like to have. I know several of us, Chelsea in particular, they run an amazing occasional reminder on Twitter if you want to follow them. You will get regular reminders to hydrate, which is hugely useful to all kinds of writers. But just make a list this week of what you have in your writing process that supports you physically and emotionally and what you wish to have. In part, because this is about finding ways to work with what you have to keep working for the long-term.
[Mary Robinette] Great advice. And good homework. So, this has been Writing Excuses. You’re out of excuses. Now go study your workspace.