In this episode, Sarah catches up with Sassy Outwater, whose brain is cancer free but is busy doing a bunch of annoying other things. They discuss her seizures, the resurgence of traditional Scottish music (thanks, Outlander!), and the importance of romance and valuing sexuality through disability and illness.
↓ Press Play
This podcast player may not work on Chrome and a different browser is suggested. More ways to listen →
Here are the books we discuss in this podcast:
We talked about a LOT of things in this episode, and Sassy had some resources to pass along, too. Links ahoy!
- Ready, Sexy, Able: “for author research. It’s got tons of ideas, topics, research, and sex positive stuff both from experience and scientific data. If it’s not up there, Robin can find it.”
- PawsitivelySassy: Sassy’s Facebook page. “I post a lot about disability and cancer day-to-day stuff there if people are interested in reading what this is like on a daily basis.”
- Wikipedia has more information about mouth music.
- The Celtic Connections Music Festival.
- More information about SMART Syndrome.
- Linda’s guest rant on SBTB about Slut Shaming in Romance.
- Chloe T. Barlow’s post on Heroes and Heartbreakers about The Pain, Passion, and Power of Illness in Romance.
We also sampled two pieces of music:
- “Theme from Harry’s Game,” performed by Clannad. You can find that track at iTunes and Amazon.
- “Finlay’s,” by Capercaillie, from their album Beautiful Wasteland. You can find it at Amazon, or iTunes, or wherever you buy your fine music.
❤ Thanks to our sponsors:
❤ More ways to sponsor:
What did you think of today's episode? Got ideas? Suggestions? You can talk to us on the blog entries for the podcast or talk to us on Facebook if that's where you hang out online. You can email us at [email protected] or you can call and leave us a message at our Google voice number: 201-371-3272. Please don't forget to give us a name and where you're calling from so we can work your message into an upcoming podcast.
Thanks for listening!
This Episode's Music
Our music is provided by Sassy Outwater. This track, and all the nifty mouth music within it, is called “Finlay’s,” and it’s by Capercaillie, from their album Beautiful Wasteland. You can find it at Amazon, or iTunes, or wherever you buy your fine music.
If you’d like to sponsor an episode in February, please email Sarah! In the meantime, here’s a book we’d like to tell you about!
Carrie Sessarego wrote Pride, Prejudice, & Popcorn: TV and Film Adaptations of Pride and Prejudice, Wuthering Heights, and Jane Eyre all about her favorite things: movie adaptations!
Three great love stories that started it all…
Jane Eyre, Pride and Prejudice and Wuthering Heights are three of the greatest novels in English literature. Now joining them is Pride, Prejudice and Popcorn, a decidedly different take on these classics. You will laugh with delight as you learn:
— The importance of thoroughly investigating your employers before accepting a job at their isolated, creepy house (Jane Eyre)
— The sad fact that not every bad boy has a heart of gold (Wuthering Heights)
— How to make a proper proposal—and how not to. Hint: don’t insult your beloved while attempting to talk her into marriage! (Pride and Prejudice)
Join blogger and romance aficionado Carrie Sessarego (smartbitchestrashybooks.com) as she takes us to the movies with Jane and Liz and Cathy. In her own unique, hilarious style she discusses the books and the various movie and TV adaptations. Your living room will be graced by heartthrobs like Timothy Dalton (twice!), Colin Firth (he shows up twice, too!), Michael Fassbender and Tom Hardy.
Whether you are in the mood for serious academic discussion or lighthearted snark, whether you prefer Regency romance or Gothic passion, and whether you prefer your love stories on the screen or on the page, this book has something for you.
❤ Click to view the transcript ❤
Dear Bitches, Smart Author Podcast, February 19, 2016
Sarah Wendell: Hello, and welcome to episode number 181 of the DBSA podcast. I’m Sarah Wendell from Smart Bitches, Trashy Books, and with me today is Sassy Outwater. Sassy is a music producer and awesome general human being. She provides all of the music for this podcast, but she’s also someone I’ve known for several years. We caught up with her last year before she was having cancer surgery, and then we caught up afterward to find out how her brain was recovering from having had a tumor removed. This episode, we’re going to talk about some of the health issues that she’s been having, we’re going to talk about Scottish music, and we’re going to talk about continuing romance and sexuality through disability and illness and how chronic illness and disability are often portrayed in a way that is entirely devoid of sexuality, which really ticks her off.
And this is just an all-Sassy podcast because she also provided the music. The music you’re hearing was provided by Sassy, and I will have information at the end of the podcast as to who this is. Plus, because we talk about Scottish music, I have some audio samples of two different forms of Scottish music in the middle of the episode, so this is a pretty musical episode. I hope you enjoy it.
And now, without any further delay, on with the podcast!
Sarah: Hello there! Good morning!
Sassy Outwater: Good morning. Sorry, I got stuck on hold waiting for a doctor. [Laughs]
Sarah: Oh, doctors.
Sarah: So, listen.
Sarah: If you have a seizure while we’re recording, is there anything you need me to do?
Sassy: [Laughs] No, Pratik is, is hanging out over there. He’ll, he’ll – or in the other room, so he’ll grab help and do what he needs to do. And he’ll just –
Sarah: How severe are your seizures?
Sassy: It used to be just aphasic, so all that would happen is I couldn’t talk, or I would sound like I was all garbled.
Sassy: Now they are pretty severe. A couple weeks ago I had a series of them in the middle of the subway because, like you do.
Sarah: Hey! If you’re going to go with a seizure, then you want to go in front of as many people who don’t want to talk to each other as possible, right?
Sarah: Right! Totally!
Sassy: And at rush hour. And at rush hour. Luckily, it wasn’t on the train or on the platform. It was, like, in between the two platforms?
Sarah: Oh, even better.
Sassy: So, like, right in front of all of the T employees, which was fantastic because it wasn’t, like, I wasn’t trampled by raging Boston passengers, which, you know, could totally be a thing.
Sarah: Right, and at least T employees are aware that medical emergencies happen and know what to do.
Sassy: And they know what to do, yeah. Last time – [laughs] yes, there was a last time – I was walking down the steps at a –
Sarah: Oh, geeze!
Sassy: – T station, and I fell down a few steps. That time I happened to be with a friend of mine who was able to, you know, he, she knew what was happening, so she was able to coordinate, like, EMS and people around, but this time I was just running errands on my own and, you know, so nobody kind of knew what was going on, and I didn’t wake up until I was in the ER. So those, there are just kind of two kinds that are going on right now. There’s the focal aphasia seizures where I just can’t talk, and then –
Sassy: – there’s, like, full-on –
Sarah: Grand mal, body shaking –
Sassy: – seizing. Yeah, which didn’t happen ever until September of, for me. I used to just get the, the aphasic stuff, and not very often, and now it’s pretty common.
Sarah: And this is all a, a side effect of not the brain cancer but the radiation that you had before that when you were a kid. Is that right?
Sassy: A lot of it, yes, is attributed to that. It caused the brain tumors. So my tumors, I can have tumors from two different sources. I can get them because I have that genetic – retinoblastoma is caused, for those of us who have it in both eyes, is caused by a gene called RB1.
Sassy: And that causes other cells to not know when to stop dividing and cause cancer throughout the body –
Sassy: – for the rest of your life, so you get really high screening for things like bladder cancer and some different types of bone cancer and things like that. They kind of know the most common ones to look for –
Sassy: – so they watch you very closely, but then there’s this thing where if you get radiation you can also get secondary tumors because of the radiation?
Sassy: So my tumors were a result of, of that, and going in there twice and doing surgery caused scarring, and between the radiation damage and the scarring, that’s kind of what is causing all of this, and they don’t know, they can’t separate out what’s more responsible for it, but they can give their best guess, and at this point, because of the brain damage that they’re seeing and the scarring that they’re seeing, they’re thinking it’s kind of a combination of both, and it just is a twist of fate nobody predicted. There’s something called SMART syndrome?
Sassy: [Laughs] Which stands for –
Sarah: Which is a terrible name, by the way. Like, if you have SMART syndrome, you should be able to do, like, you know, when you need to multiply a recipe by one and a half? You should just be able to look at the book and be like, boom! I know what to do here.
Sassy: I know, right? Somebody jokingly said I need to get you a T-shirt that says, I have SMART-ass syndrome. I’m like, yeah, basically.
Sarah: [Laughs] Yes! Yes, please.
Sassy: Yeah, I do need that T-shirt. [Laughs] So they basically – it stands for Stroke-like seizures and Migraines As related to RadioTherapy.
Sarah: Who the hell came up with that?
Sassy: I, some –
Sarah: Stroke, Stroke-like Migraines As a result of Radiation Therapy?
Sassy: And it’s very, a very uncommon, like, you can Google this and there will be, like, almost virtually nothing.
Sassy: And it usually shows up for people who are in their fifties or –
Sarah: Which you’re not.
Sassy: – adults over forty who have had brain tumors. Brain tumors don’t usually happen until you’re over your forties or you are a very young child. Those are the two times where brain cancers are most common.
Sassy: They can happen other times, but – and you get radiation to the cerebral area of the brain, and – [laughs] – so that’s where they’re used to seeing this thing show up, and they don’t, I mean, there’re so many things that are contributing to this and, and kind of all collecting to cause what’s going on right now that all, they’re, they’re primarily focused right now on just getting it under control. Trying to get epilepsy under control is always a joyful cocktail of medicines and preventative measures and –
Sarah: All of which do really messed up things, right?
Sarah: I have a friend who has epilepsy, and she went through several medications, and –
Sarah: – you know how women’s body chemistry, like, changes every ten to fifteen years, and you’ve got to start all over again –
Sassy: [Growls] Yes.
Sarah: – and be like, oh, look, different house. Same body –
Sassy: Yep, yep.
Sarah: – different house. Got to figure out the new cocktail. And she, she was so sleepy –
Sassy: Yep. Yes.
Sarah: Like, she’s like, I’m cleared to drive, except for the part where my medicine makes me fall asleep –
Sarah: – so I shouldn’t drive.
Sassy: Basically, it turns you into a narcolepsy – yeah. And it makes your birth control ineffective, so you have to go do other birth control and/or –
Sarah: Ah, dude!
Sassy: I know, right? Like, that’s –
Sarah: Dude! Like, no!
Sassy: That’s what I’m sitting on hold for when I was waiting for this, because yesterday they changed my meds again –
Sassy: – and it was like, let’s have the birth control talk! I’m like, let’s not, ‘cause awkward, ohhh. And so now I have to go talk to my specialist OB/GYN and be like, my brain doesn’t like my uterus, and my uterus doesn’t play nice with my brain. What can you do to fix this? [Laughs]
Sarah: Can you get, like, a, a, an IUD or anything?
Sassy: Technically it can cause issues, so I have to check with my oncologist and my OB/GYN.
Sarah: Oh, geeze Louise.
Sassy: So, yeah.
Sarah: ‘Cause you know, it’s totally easy to coordinate multiple doctors to talk to each other. Like, they do that all the time!
Sassy: Oh, God.
Sarah: Like, it’s easy. Just get ‘em all on, like, Google hangouts. It happens all the time. Not.
Sassy: I am trying to localize as much of my care as I possibly can, but I’m coordinating one, two, three, four, three hospitals regularly, four occasionally. But I don’t even see a doctor anymore unless they are directly affiliated, like, their hos-, their office is in one of those hospitals, because I just can’t do it. And, like, right now, when I had the seizure a couple weeks ago that put me in the hospital, they just, you know, all of my health information, you have that little app on your phone that tells them, you know –
Sarah: Did you have to buy a new phone with more memory just to hold that app?
Sarah: You, like, walk around with, like, a thumb drive the size of a small turtle and be like, here you go! [Laughs]
Sassy: Pretty much, but then they don’t read it! Like, they just grabbed and ran, and I get that because, you know, save lives and stuff like that? We don’t have time to check cell phones, but they just grabbed and ran to the nearest hospital, so I wake up, and I’m at a hospital I’ve never been at before. I’m like, great.
Sarah: Oh, that’s, that’s, that’s, like, at the bottom of a long staircase.
Sassy: Oh, my God, the disability stuff was so bad at that hospital. Oh, my God, I wanted to scream. I got out of there as soon as I could, but it was just not soon enough.
Sarah: Like, they, they, there was no way for you to get around?
Sassy: No, it’s, you come in with a service dog – the ER was fantastic. The emergency department nurses went above and beyond. This, you know, woman shows up with a guide dog. The EMS did exactly right – go Boston EMS. I love you hardcore. They did exactly right: they grabbed my dog, they grabbed me. I was completely out, unconscious, seizing, whatever, but they took the dog with me. I wake up, the first thing that they’re doing is grabbing my hand, saying, if you can hear me, squeeze my hand. And of course I can’t talk –
Sassy: – and I have to communicate to them. I’m perfectly intelligent. I’m perfectly capable of, you know, interacting with you and making my own medical decisions, and that’s something that automatically comes up when you see a patient with neurological issues and disabilities is, can they make their own medical decisions? Are they –
Sassy: – competent to do that? So you don’t just show up in the hospital. You’ve got to deal with proving your IQ within thirty seconds, and –
Sassy: – you feel like crap because your brain just rebooted itself and did a back flip.
Sarah: So you have, like, mega brain blue screen.
Sassy: Oh, yeah. Please wait. Screen of, of blue is showing, and you’re trying to –
Sarah: Wait, no, no, no, you’re a Mac person! So it’s, it’s a –
Sassy: I am a Mac person, but in this case –
Sarah: – it’s a spinning beach ball.
Sarah: The spinning beach ball is, like, five feet wide.
Sassy: Yes, and it’s not going anywhere any time soon. But the, they did exactly right in that the paramedic or whoever that was standing by my bed was like, your dog is right here, he’s looking over the edge of the bed, I’m holding him –
Sassy: – he’s with you. So-
Sarah: And I’m sure the dog is like, whaaat?
Sassy: Ferdie was amazing. Like, he has really been stressed out in the past –
Sassy: – by all of these stuff, but he’s starting to get it. He’s starting to understand that this is part of his working life, and it doesn’t stress him out as much as it used to. He’s just kind of like, okay, I know she’s okay. I know she’s in good hands. He’s always been scared of firefighters.
Sassy: Like, the firefighters come in, or he sees them in full turnout gear walking somewhere, and he’s like, uh-uh. You are, you are an alien. You look weird.
Sassy: You smell weird. I don’t like you. But for whatever reason, he’s been –
Sarah: My human has –
Sassy: – in an ambulance a couple times, and he gets it. He just –
Sarah: My human has unique situations.
Sassy: Right. [Laughs] And he handles it like a pro, and he just stuck his nose over the edge of the bed and looked at me, and he’s like, okay, you’re okay.
Sassy: I can go hang out here.
Sarah: Let me just tell you, Sassy, I checked the vending machine. It’s terrible. We need to get out of here.
Sarah: There’s no dog bones in there! We need to go! For real, lady, this is not good! [Laughs]
Sassy: Well, literally, like, one of the nurses walks in, and she’s like, what can I do for your dog? Does he need a walk? Does he need water? Can I get you some food?
Sarah: Oh, goodness!
Sassy: What do I do? And I’m like, in my backpack is food, a bowl, water. You know, like, I carry around all his stuff for him.
Sarah: I’m sure you carry more stuff for him than for you.
Sassy: I do. It’s ridiculous.
Sarah: Because that’s just how it is. [Laughs]
Sassy: Well, that, and it’s winter time in Boston. I have dog shoes, and I have a dog coat. I have a dog bowl; I have dog food; I have a water bottle for the dog; I have a water bottle for me. I carry baby food because that’s one of the things that I can eat right now.
Sarah: Oh, and what baby food are you enjoying?
Sassy: [Laughs] Right now there is currently a smoothie sitting next to me, and there is, I don’t know, peas and carrots and broccoli or kale and apple or something like that.
Sarah: Oh, man.
Sassy: I don’t know what they are; I just grab them out of the, the basket that I keep them in.
Sarah: Ah, man.
Sassy: It’s just, you know.
Sarah: Wait a minute, baby food labels are not Braille. There’s –
Sassy: No. I could scan the barcode with my phone and figure out –
Sassy: – what it is if I really want to –
Sarah: This is technology, man!
Sassy: – but they all stick them in the same bag, so if I really want to know what I’m eating and not just –
Sarah: You’ve got to barcode scan the food.
Sassy: – randomly guess, I have to scan, and I didn’t feel like doing that.
Sarah: Having had babies and then baby food, I imagine that there are some where the barcode scanner would be like, look, you don’t want to eat that.
Sassy: Yeah. [Laughs] It’s like, don’t touch that. Don’t Touch That.
Sarah: It’s like, seriously, that is used for giving your cat pills. That is not really something for humans. That’s when the cat won’t take its medicine. [Laughs]
Sassy: I’ve – your, your boyfriend, Kody – Kody is Sarah’s boyfriend, y’all –
Sarah: Yes, Kody is my boyfriend.
Sassy: My old, my old guide dog had massive surgery back in, right around Thanksgiving for a tumor. I’m like, as if we don’t have enough tumors in this house!
Sarah: He wanted to be like you! Don’t rain on his dream! [Laughs]
Sassy: He did! He had great aspirations! Well, no, because he was better than me. He did this, like, massive thing, and his tumor was benign, so he was like, dude, see this is how you do this, human.
Sarah: Let me show you just how this works.
Sassy: That’s really what I felt. That was –
Sarah: You, you grow a grapefruit, and then you just take it out, and it’s, like, no big deal.
Sassy: No, his wasn’t a grapefruit; his was a baby. My dog had a baby. He had a six-pound tumor taken out. He had his –
Sarah: Holy cow!
Sarah: That’s like a C-section!
Sassy: Apparently they’ve seen tumors up to thirteen pounds. I’m like, how does that –
Sassy: – fit there? No.
Sarah: Oh! So he’s fine now.
Sassy: He’s fine! Oh, my gosh, he’s Kody. He – there was a game we call, in this house, we call it dog-sledding. So, my, Ferdinand –
Sassy: – my current guide dog, will lie on his back with his legs in the air and hold a toy in his mouth –
Sassy: – and Kodak will grab it and pull the dog –
Sassy: – Ferdinand, on his back through the house. Ferdie just lies on his back –
Sassy: – like, Whee-hee! [Laughs]
Sarah: And it’s a good thing yours and Pratik’s hearing is probably well-tuned to dog fur on hardwood and dog, dog fur on rugs. Like, oh, sledding! Don’t go that way!
Sarah: Look out, ‘cause the guide dog is not guiding you if he’s sledding. It’s, it’s, it’s a –
Sarah: – you can’t do both. [Laughs]
Sassy: He lies upside-down. I’m like, there is no dignity involved in this. You understand that. You are a guide dog, but right now you are a sled. You are a dog, and you are a sled. Okay, bye.
Sassy: [Laughs] And Kodak is, you know, within, like, three or four weeks of surgery, he was back to pulling Ferdinand around the house.
Sassy: I’m like, dude, how does this work?
Sarah: Dude, really? I mean, you know what your body can do, Kodak, but, yeah, don’t pull your stitches.
Sarah: Pull, I, I wouldn’t, I mean, I, when I had a C-section with my younger son, I wasn’t allowed to go up and down the stairs more than a couple times a day, and I couldn’t lift things, and like, you know, I had a two-year-old who’s like, pick me up! And I was like –
Sarah: – no!
Sarah: No. [Laughs] I don’t know if I would have pulled him around the room either.
Sassy: So my guide in between Ferdie and Kodak was Whidbey. This little –
Sarah: Whidbey – he now lives out in California, right?
Sassy: Nope, she lives with a friend of mine in Lynn, which is about thirty to forty minutes away from my house in Cambridge, and –
Sarah: Ah! East coast.
Sassy: Yes. Normally she would have reverted back to her puppy raisers, but her puppy raisers live in California, and that would have meant an extra plane ride, and her puppy raisers are incredibly perceptive and wanted to make sure that Whidbey was able to see them and me, and they have a place up in New Hampshire so they can come visit her when they want to, and my friend had just lost her Labrador a couple weeks before. I had an emergency retirement for Whidbey because panic attacks.
Sarah: Poor thing.
Sassy: I, my gosh, that was horrendous. But they stipulated if we retire her and Char adopts her, we have one request, and that is that she become a, a therapy dog or find another job –
Sassy: – because that dog was built to work. Her brain was built to figure stuff out.
Sassy: She’s a rocket scientist. The rocket and the scientist.
Sassy: So she and Kodak and Ferdinand, we all got together for Thanksgiving, and this was right after Kody’s surgery. Like, he didn’t even have his stitches out yet, and I’m like, okay, so how are we going to keep them all from, like, destroying your house, first of all, Char –
Sassy: – which is Whidbey’s human now, and how are we going to not have them destroy Kodak? And she’s like, we’ll stick the young ones outside, they can go sit at the kids’ table, and Kodak can, you know, hang out at our feet and watch our food and give us the guilt trip for not feeding him all the turkey. So the whippersnappers, the two- and three-year-old Labradors, got banished to the back yard, and they had a blast, and Kodak hung out with the grownups at the grownup table, and then –
Sarah: I eat the turkey.
Sassy: – they came in and, you know, they, the fact that all of them have been guide dogs and kind of know how to switch off play mode worked to our advantage, because we were like, no, you guys have to, to, you know, behave yourselves, and Kody got to jump up on a couch and sit with us, which kept the two young ones on the floor, and they were like, fine, we’ll just play down here, and Kodak was like, I want to go play! And I’m like, no, you can’t go play, and Kodak’s like, you’re rude.
Sassy: But – [laughs] – so he got baby food. That was the only way I could get him to eat his dinner the weekend after the surgery was to –
Sarah: Seriously, that’s why some of these baby foods exist.
Sassy: – mix some baby food into his kibble –
Sassy: – and feed him by hand a piece at a time with baby food all over my fingers. I’m like, this is, this is the height of gloriful, glory, beautiful humanity is feeding my Labrador with, like –
Sarah: Your hands.
Sassy: – chicken and gravy all over my fingers.
Sarah: Oh, yeah. No, I, I’m there. I understand that completely.
Sarah: So let me ask you, when we were emailing –
Sarah: – you mentioned that you, you’re working on music and that Scottish music is becoming more popular.
Sassy: Whoa-ho-ho, yes. So Outlander hit.
Sarah: Oh, yes, it, it hit many of us.
Sassy: It hit hard, and it, they did a really cool, cool, cool thing in that Gaelic is very strongly used. They, they went with kind of a more modern approach to an ancient tradition and an ancient language, and they know that there are those of us who still speak it fluently, and they –
Sarah: You speak Gaelic?
Sassy: I do! I grew up –
Sarah: Get the hell out!
Sassy: Yep! So they, we, they went with a, an approach where they, they used native speakers. They consulted native experts, and they used common Scottish music that is kind of known to everybody, but those who, you know, if you like Celtic Thunder, Celtic Woman, that’s, that’s fine, but they went with more traditional, or trad, roots –
Sassy: – and people were like, oh, there’s more to this! There’s, you know, Scottish stuff and Irish stuff has always kind of been, like, the big thing, the big pop culture icon, but it, the traditional folk side of it has hit this huge resurgence since Outlander showed up, and record labels are like, oh, yeah, hey, there’s, there’s this. Let’s go capitalize on it. And all the artists are like, we are independent, but we’re not opposed to making a buck or two? [Laughs]
Sassy: So Celtic Connections is this huge festival that happens in Glasgow, and they’re, they’re having, I want to say it was, like, 250, or something huge like that, music execs show up, and hundreds of, of bands and artists are there. Our favorite Peatbog Faeries were down there; they just headed home a couple days ago.
Sassy: [Laughs] This is where the licensing is going to get inked, so if, if a song gets featured in a commercial or on a TV show or something like that around the world, all these artists are signing these deals right now for the year. Money is getting spent. Songs are getting recorded in studio, because all the artists are in the same spot at the same time. They’re like, hey, let’s just show, you know, go get this done. So a lot of artists within the next month or two are dropping albums, capitalizing on their performance here at Celtic Connections, and, so there’s a ton of amazing Scottish music coming out in the next two months.
Sarah: Ooh! And you’re going to send me some and tell me what to play, right?
Sassy: Oh, yeah.
Sassy: The album I’m currently obsessing over is Emily Smith’s new album, which is coming out, I want to say it’s, like, February 9th or 16th?
Sassy: But it is absolutely stunning.
Sassy: And it’s mostly vocals. We feature all-instrumental music on the podcast, but this –
Sarah: Yes, we do.
Sassy: – this one has a lot of, of vocals, which is, I, I work with amazing artists and labels who feature more vocal work.
Sarah: And the vocal isn’t a problem. It’s when the vocal is spoken in English, because then it’s, then it’s going to confuse –
Sarah: – if I’m talking over it, it it’s my –
Sarah: – I think that’s called the bed when I’m talking.
Sarah: Check me out! And you know, outro is totally a word?
Sassy: Outro is totally a word. [Laughs]
Sarah: Yeah, my, I’m still arguing about this with Adam, but he’s, he’s willing to, he’s willing to concede because it, it’s usable in Scrabble.
Sassy: Oh, no, we, we use it in the studio all the time –
Sassy: – so you can tell him the experts say –
Sarah: Outro’s a word! [Laughs]
Sassy: – you win.
Sarah: But if it, if there’s, if there’s talking or singing in English, then it makes it harder, I think, for people to separate my voice from the other voice, but if it’s just vocalization and – okay, there’s a, there’s a term for this, and it just flew out of my – is it – okay, so, the, the theme song to – I love my brain – Harry’s Game, which was done by Clannad, has, is it mouth sounds? Voice –
Sassy: Mouth music, yeah.
Sarah: Mouth music! Okay, I was –
Sassy: There you go!
Sarah: – I was kind of close?
Sassy: She’s got the, the Gaelic folk traditions down. Mouth music was invented by the Hebridean or the, the western isles of Scotland. It’s commonly used out there. They have mouth music, and they have waulking music, which in, I want to say it was episode five of Outlander, they show an episode of, of how mouth or waulk-, waulking music works, and it’s, the women are dyeing wool and passing it from hand to hand to work the wool to, to become –
Sassy: – tartan and clothing and what not, and they’re using urine to, you know, dye the wool, and it’s smelly –
Sassy: – and it’s miserable work, and the, everything is boiled and hot and gross, so they’re singing in time to keep the, the wool from getting tangled up, and they’re, they’re keeping rhythm, and that’s why waulking music was invented was for these women to all sing in time as they pass the wool. And mouth music is the same thing: it’s, it’s Gaelic, but it’s, a lot of times it’s just nonsensical kind of rephrasing of words and things that were used by people just to kind of keep time as they chopped peat or fished or did whatever they had to do to keep their lives moving while it was freezing and the wind was whipping off of the, the ocean, and life is hard, and they made the best of it by coming up with these great songs! Capercaillie and Karen Matheson, Karen Matheson has just put out a new album in September –
Sassy: – called Urram, and there’s a great example of mouth music on that album. She’s kind of the classically, she’s been around for thirty-five years maybe? She’s kind of the legend of Scotland –
Sassy: – as far as all of these western isles and, and Highlands traditions go, but she put out this amazing album, and it’s got mouth music, it’s got waulking music. She is kind of known for singing the examples of that that the western world can hear and use.
Sarah: So if while I’m editing I wanted to drop a sample of mouth music into our conversation –
Sarah: – what, what would you recommend, and how much of it can I play before somebody’s like, whoa, whoa there! Whoa.
Sassy: I will actually send you a track –
Sassy: – within, like, thirty minutes.
Sarah: Ooh! Technology, man!
Sassy: Capercaillie’s –
Sarah: Barcodes on baby food, and instant music.
Sassy: Instant music. Caper –
Sarah: What a time to be alive!
Sassy: Capercaillie has several albums that have great, a, a bunch of stuff on it, so you can pick –
Sassy: – which one you want, yeah.
Sarah: Thank you!
Okay, let’s take a break for a quick sample of what we were just talking about. This is Clannad and the “Theme from Harry’s Game”:
So that’ll make the hair stand up on the back of your neck, right? Yeah, totally. The next piece is a sample of what Sassy recommended. This is Capercaillie. This is called “Finlay’s”, and it’s another example of mouth music, which is really cool if you start to listen to a lot of it:
So, another question for you, ma’am:
Sarah: You have been dealing with a lot of crap, and you mentioned when we were emailing that there’s a lot of ways in which you’ve seen how cancer and disability and a love life work together.
Sassy: [Deep breath] Yes. [Laughs]
Sarah: Just a little bit. Is, is, is, does Pratik need to leave the room if we’re going to talk about this?
Sassy: No, he’s not in the room. He’s –
Sassy: – he’s currently out there keeping the dogs from destroying the house.
Sarah: Well, that’s kind of his job. Why would you stop him?
Sassy: We just got the Christmas tree completely put away this week. We had the ornaments off for weeks, but we finally had time to stop and put the tree away, so I think the dogs are like, we have the corner of the living room back; we can go destroy stuff over here. We just reincarnated their favorite toy, Louis the Sixth, the Tuffy Toy crab –
Sassy: – so I’m sure they’re currently using their crab to annoy him, and he’s trying to get work done, so. Boys.
Sarah: [Snorts] Boys. [Laughs]
Sassy: Yeah, disability and, and romance. So, here’s –
Sarah: That’s kind of a, that’s kind of a topic that’s being discussed in a much larger sense in a lot of different places.
Sassy: It’s huge right now, especially in, in romance literature. Heroes and Heartbreakers just had this great guest post by Chloe – you know what, I meant to look up her last name before we got on this call, and I didn’t.
Sarah: Fear not: I will link.
Sassy: But she talks about chronic disease in romance and how, the way we’ve always seen romance frame, romance literature frame disease and disability is the, the victim. Something horrible is happening to me. The hero swoops in, fixes it, or takes care of the heroine, or is attracted to the heroine because she’s reduced by the thing that she’s facing.
Sarah: Oh, Chloe Barlow! Her novels take place in Pittsburgh.
Sassy: I have not read her, so I’ve got –
Sarah: This is A Steel Town, it’s a Gateway to Love novel, and –
Sassy: I one-clicked that. I, I one-clicked the hell out of that piece after she wrote that guest blog. I was like, ah-ha-ha, I need this book. I have not read it though yet.
Sarah: Because dealing with chronic illness is, like you said, the emphasis is usually on, if not outright healing and recovery, then –
Sarah: – saving and –
Sassy: How does this make me less than, or how does this make me need the hero to fix me?
Sassy: The f-, I, I call it the fix-me savior syndrome. Or the, the fuck-me savior syndrome. [Laughs] One of the two.
Sarah: It could be one or both, depending on the genre.
Sassy: And it really, really – I think a lot of us who actually live that life have a problem with that, because that’s not how it works, and I didn’t realize it until, as an adult with a sex life and cancer, I started going through it. And a not-conventional sex life. I have a, I have many different pieces of, of my sexuality and my love life that are, are non-monogamous, non-hetero. They’re, they’re very different compared to most people.
Sarah: So you’re kinky and poly and queer.
Sassy: I am!
Sassy: I, I don’t talk about it much, but I do feel that it’s important to talk about it on here because people need to know that it’s okay, and I had a recent experience that was just perfect demonstration of this, and that is that you can be lying in a hospital bed with tubes all over you, and your partner can walk in and see your brainwaves on the screen and be like, let’s conduct an experiment! And right there in front of the camera while they’re watching you for seizures, he can just grab you –
Sarah: Oh, no!
Sassy: – in the hospital bed and be like, you are still totally hot to me.
Sarah: Oh! For real?
Sassy: For real!
Sarah: That’s awesome.
Sassy: It was. It was pretty badass. It was, it was one of those moments where you just kind of, you don’t think of yourself as sexy. You think of yourself, we societally condition ourselves to believe that when you are in a hospital or when you are facing a chronic disability or illness that you’re not sexy. We asexualize disability, and we asexualize chronic disease so badly in society, and in romance novels in particular, that très sexy gets taken out when you are sick.
Sassy: You can’t possibly be both at the same time. And when he did that, and he’s like, I want to find out what happens to your brain if I do this, and cops a feel under the covers, I was like –
Sassy: – did you just – ? And I just stared at him. I went, I, like, the last thing I feel right now, having, you know, just recently used a bedpan and had a seizure and you can see my brainwaves on the monitor – he’s like, that’s the fun part. Like, I can watch what this does to you, and I’m like, you are twisted, but okay.
Sarah: And, and you are totally on board with this.
Sassy: I was totally on board with it! It’s a good way –
Sarah: So it’s not a question of, of lack of consent, it’s like, oh, hey!
Sassy: Oh, no! This is –
Sarah: This is fun!
Sassy: It was, I was, like –
Sarah: Can I borrow that –
Sassy: – the last thing I feel with glue all over my head –
Sassy: – and an EEG monitor on my head and –
Sarah: Can we borrow that brainwave monitor just for a couple of days?
Sarah: We’ll bring it right back, we promise!
Sassy: And I’m like – and I think that was his point was that you can be as sick as a dog, and you are still beautiful –
Sarah: You are still des-
Sassy: – and you are still sexy –
Sarah: – and you’re still desirable!
Sassy: – and you are still hot!
Sassy: And sex doesn’t have to be this traditional deflowering of the virgin. You don’t even have to frickin’ orgasm! I kind of – and I’m going to plug her hugely – Megan Hart does this thing in her books where she doesn’t always have the heroine orgasm. The, the heroine can hook up with other men besides her hero. ‘Cause this came up – oh, my gosh, you had the most amazing guest rant on this, last week I think it was?
Sarah: About slut shaming?
Sassy: Slut shaming and, and multiple partners and things like that throughout a book.
Sassy: I write that. When I write my romance novels, that’s what I write. I write hero-, heroines who, when they do their thing, they’re, they’re not ashamed of their bodies and their sexual wants and desires, but orgasms don’t always mean great sex, and great sex doesn’t always mean orgasms. It doesn’t –
Sarah: But if there’s not cresting and shattering and great waves, then how do we know he’s the one?
Sassy: Oh, my God.
Sarah: Sassy, come on, you’re dismantling the foundation of singular monogamy here. Which I –
Sassy: I got that –
Sarah: – which is kind of like the whole point. [Laughs]
Sassy: I got that so bad when I started showing my books around to beta readers? That was the primary feedback I would get was, she’s not supposed to be with other people, or she’s not supposed to, you know, get an orgasm from somebody who’s not the hero, and I’m like, well, she did. What do you want? [Laughs] Like –
Sarah: It’s, it’s almost like, one of the things I notice a lot of times when I’m reading and thinking about all the different sex scenes that I read is that for much of the time the sex is from the heroine’s point of view –
Sarah: – and for much of the build of tension, there is some sort of barrier that substitutes for virginity. There’s something that they’re not going to do until it is, their relationship is established, and you can’t have this wandering wild vagina wandering about, having sex with other people and having orgasms. We can’t have that! It needs to be contained and focused on one person.
Sassy: Which is why disability and chronic illness make such a great vagina cage. [Laughs] They really do.
Sarah: Oh, my God! I think I’m, I’m going to have to title this, this episode Vagina Cages.
Sarah: I’m not really sure, like, what’ll happen when I do that, but we’ll see.
Sassy: Oh, dear, this is going to get me into trouble.
Sarah: So how do you combat the asexual, asexuality of people who have disability and chronic disease? Do you portray them having wild, happy orgasms? In romance?
Sassy: No! You figure out moments like when my partner walked into the hospital and still saw me as hot as hell –
Sassy: – even though I’m in a hospital gown, and you, you sit there and you go, oh, my gosh, so I’m not – and you have to figure that out in real life before you realize – I did, anyway.
Sassy: I mean, and I’ve, I’ve known that that’s a thing, but we always hear that guys like girls with makeup on and perfect and nanana bullshit. You have to have an experience or have an understanding that your worth, your sexual worth is not – or your character’s sexual worth, as a writer or as a, a reader reading a character like that – is not wrapped up in that cage. It’s not – how did they, the reviewer put it? That you had, intellect and promiscuity are not mutually exclusive.
Sassy: You don’t have to be smart to have, you know, a virgin vagina. [Laughs] You don’t, that cage is not a thing.
Sassy: And they’re a person.
Sarah: And that people are more than one thing.
Sassy: If you are stupid, that does not automatically make you a slut. If your IQ is less than, that doesn’t – you can have an IQ of one-frickin-eighty and, you know, hook up with people wherever you want.
Sassy: That’s not a thing. But it is in, in romance novels, and I think we need to, to look at this and go, why? And that gets into the whole disability and – or, excuse me, diversity in, in romance, and we need to look at our, our reading preferences especially, ‘cause writers can write –
Sarah: But also, people are, people, when you, when you look at the asexualization of people with disabilities and people with chronic illnesses, especially in the world as created by romance novels, like if all the romance novels everywhere all combined to have just one, it was one world, right, and all the characters inhabited it, and that was its culture, the combined messages and the combined pieces of the culture were all part of that world –
Sassy: Oh-ho-ho, my gosh, that’d be bad.
Sarah: Well, yes! It would be enormously bad. If you, when you reduce people to just one thing, then sexuality is never part of that one thing.
Sassy: And what we, we don’t recognize so much when we’re writing but came out very clearly yesterday – there was a Twitter exchange I happened to catch – was when we write that way?
Sassy: We who read it, readers –
Sarah: Internalize it.
Sassy: – who have never experienced disability first hand, we internalize it. So I’m, I come in, I’m obviously aware, I’m obviously cognizant, I’m obviously making my own medical decisions and, and have a fairly high intellect rate, and yet because I come in disabled with a neurological and a visual impairment, one of the nurses, her instant question to me – and this was not the emergency room; this was after admission where you’ve taken a patient history, you know something about this patient, you know what this patient does for work, you know this patient does work –
Sassy: – you know this patient has a life, and her question to me was, what group home are you in? And I’m like, excuse me?
Sarah: Ohhh, nooo. No, no!
Sassy: Which, there’s nothing wrong if, if you are in a group home, there is absolutely nothing wrong with that, but you need to look at a person-by-person basis, not as a disability-related basis. The person is not the disability. Which gets into person-first language. I’m not even going to go there; that’s a disability advocacy thing. But it’s, it’s indicative of this idea that we have, like you said, that you are that one thing.
Sassy: And you can’t be, possibly be anything beyond that.
Sarah: And the portrayal of women echoes that. It, we, we have to fit –
Sassy: Mm, yeah, very much.
Sarah: – women characters into virgin, crone – what’s the third one? Mistress?
Sassy: Maid, mother, maid, mother, crone, yep.
Sarah: Mother! Maid and mother, thank you. I was like, mistress? Mother? Mother-miss – no, that’s not right. Mother Superior? No, that’s wrong.
Sarah: We, we, we assign a singular role to women as well. If you’re a mother –
Sarah: – then you’re absolutely asexual.
Sarah: If you’re a mother, there’s no more sexy times for you.
Sassy: [Laughs] No. You can’t possibly have a kid and get laid, no.
Sarah: No, nonononono.
Sassy: That’s bad.
Sarah: That’s terrible. Terrible, terrible! Horrible. What are you going to – what are you talking about? So, one of the things that I, one of the things that I wanted to ask you about, though, is when you are dealing with all of these chronic problems – and I’m assuming you can hear my dogs losing their shit.
Sarah: So we moved –
Sassy: Well, you know, it’s a constant party at, at your house, right? I mean –
Sarah: Oh, yes, yes. It’s –
Sassy: The Hot Pink Palace of Bitchery if where all the dogs go to get their dog on, right?
Sarah: Only if you have massive anxiety and require Prozac. One of my dogs –
Sarah: – is afraid of, like, air currents, Chihuahuas. One of my dogs is small and friendly and is like, hey, let’s hang out, and then the larger one is terrified, only likes the one dog, his best friend is, or his brother is the only dog he’s allowed to have near him, and any, every other dog, including, like, the tiniest little fluff ball that would never hurt anyone? He’s like, no, no, no, no, no, bad.
Sassy: [Still laughing]
Sarah: Bad, very bad. Oh, this is bad. Like, and it’s full-on, and it’s, it’s horrible. Like, we have Prozac and a ThunderShirt, and he has a pheromone collar. Like, I will do anything to try to make him more calm.
Sarah: It’s like, you know, the, the fur on the back of his shoulders goes up, his eyes get wide –
Sassy: Oh, yeah.
Sarah: – and his eyes roll back, and he’s, his, his lips go back, and I’m like, oh, dude. Dude, it’s a Chihuahua, and he’s asleep. It’s okay. No! No, not okay, The Lady, not okay. We need to go now. So, yeah –
Sarah: – anxiety dog party time. Anyway. So.
Sassy: I had one of those; that’s why she retired, except it was –
Sassy: – airplanes, not Chihuahuas. [Laughs]
Sarah: Oh, poor, poor thing. So what are some things that you have read recently that you recommend? What are some things that you’ve enjoyed? It doesn’t have to be about disability, illness, chronic illness, ‘cause I mean, it’s, I don’t plan the, the episodes far ahead?
Sarah: I usually work about three or four episodes ahead, but you know, we had Elyse in December talking about chronic illnesses and sexy times and how – she has fibro – and, and –
Sarah: – how dealing with chronic pain affects the way you see romance? So I don’t plan this ahead, but apparently the themes for the next few episodes have been chronic problems –
Sarah: – let’s portray them accurately and not suck. [Laughs] So what, what have you read that you totally recommend? It doesn’t have to be disability focused.
Sassy: Hold Me Close by Megan Hart. I guess I’m, I’m doing a Megan plug again.
Sarah: I am totally fine with this.
Sassy: Just – [laughs] – it just came out a month or two ago, and it talks about two characters who were kidnapped as – again, not a Sarah book – were kidnapped as teenagers and held hostage together for years at this guy’s house, and the guy abused the boy, not the girl –
Sassy: – but she was around. Sorry, I know, not your thing. So they both –
Sarah: It’s okay if it’s not my thing. I still have, you know, my surfeit of empathy going, no, no!
Sassy: Oh, my gosh, yeah. It’s a, it’s a hard book to read. I even had, like, the whoa on this one. Normally I can read her stuff and kind of just roll with it, especially, like, the disability-related things, but this one got me. But the characters come out of that with some, some PTSD and some past and some, some shit, and they become lovers during the time that they are imprisoned together.
Sassy: And they are their primary source of support because they get each other. They know why they can’t drink something if it’s not clear liquid.
Sassy: They know why they can’t eat something unless they can look at every ingredient on that plate.
Sassy: They just have these little quirks that they both have and they both share, and they get each other completely, and yet one of the characters feels like that should be the thing that brings them together forever and happily ever after, and the other character’s like, but no, I don’t want to keep reliving my past, I want to try to put it behind me, and tries and tries and tries, and can’t, and feels angry with herself that she can’t put it back. She can’t get away from it. And so they go – circles are vicious; hello, Aaron Sorkin – they, they go around and around and around this circle, and they try to, try to get beyond that, and they can’t, and they, they keep trying, and they don’t. That’s the beautiful part of this book. That’s what made this book for me, is they don’t magically break out of it. They don’t fix each other. They don’t savior each other. They support each other –
Sassy: – and that was the, the difference for me with enjoying this book versus, like, throwing my phone across the room and going, I hate this book, was the characters’ support and the, I am messed up, but I’m still a person, and I can still have sex, and I can still be, you know, desirable, and I still want to appreciate who I am.
Sarah: I think one of the most powerful things about romance is the idea that there is a person who’s going to say, I get it.
Sarah: I don’t have that experience or I don’t have all of it, but I get it. I understand. It’s okay.
Sassy: Right, and it’s, it’s empathy versus sympathy, and I – so there’s this thing right now that bugs the crap out of me where we do this profiling, and it’s a pop culture thing, and we say, never date a narcissist! Never date a sociopath! Never date – or the top ten ways that you can tell that your partner is whatever, and we start examining the people we’re with and looking for problems or things to be aware of and red flags, and yeah, you have to be careful with people you’re with, ‘cause some people are going to treat you badly. That’s not a, that’s perfectly valid, but when we start labeling people by things that can have multiple implications, like, sometimes if you don’t understand social cues, you have autism, or maybe you’re not diagnosed, but you might identify a little bit on that spectrum. That also can be a crossover with somebody who’s a raging sociopath/serial killer, and by the way, sociopaths and serial killers are not always the same thing. They’re not bad. We have this idea that if you bring mental illness, which, yes, can be construed as a disability or a defect in romance novels in –
Sassy: – go away the sexy, and no, it doesn’t work like that.
Sarah: And people who have low levels of empathy or have very hard time connecting and understanding or even feeling the emotions of other people are not necessarily going to go on a rampage and start killing them.
Sassy: Which is why alpha heroes pay out millions of dollars per year to different authors. [Laughs] Just bringing that up.
Sarah: Nooo. Well, you know what, it’s weird. He’s an alpha hero because he is largely unconcerned with the feelings of others and does, does what, what he wants to do –
Sarah: – but at the same time, he can magically sense all of these things about the heroine’s sexuality that she has no idea about.
Sassy: And she’s one-dimensional. As long as he satisfies her sexually, knows what she wants, you know, five years in advance sexually, then he’s, like, the perfect guy, and that makes him the hero. No. That’s not a thing. [Laughs] I mean, it is, because it obviously generates funds in the romance genre – hello –
Sassy: – Christian Grey. Get out of my house; never come back; I hate you. But anyway.
Sassy: We have this, this pervasive idea, again, and it’s romance literature carries over into real life and vice versa; we bring our real-life conception of disability and mental illness and, and –
Sarah: Slut shaming women. Yep.
Sassy: – romance and slut shaming into our romance novels, and –
Sarah: Yep. It’s there ‘cause it exists, as Carolyn Jewel pointed out in the conversation –
Sarah: – on the site.
Sassy: Yes. And it’s –
Sarah: Yeah, it’s there ‘cause it’s there.
Sassy: – and it, do we do it, is it a writer-perpetuated thing, is it a publisher-perpetuated thing, or is it a reader-perpetuated thing? Or is it all three? I think it’s all three. I personally –
Sarah: I agree. So I am guessing that RT is not on your agenda this year.
Sassy: RT is not on my agenda this year because I hate Vegas. It has nothing to do with health stuff. I will be at RWA in San Diego.
Sassy: I cannot wait because RWA is doing lots and lots of things that – there was a couple years where I was not doing RWA because website and accessibility issues –
Sassy: – but they are now –
Sarah: That’s a, that’s a very –
Sassy: – engaging in a dialogue about that.
Sarah: They are very attentive to that now.
Sassy: They are, and I’m hugely proud of that and glad of that and plan to take full advantage of it when it comes to fruition, because yay.
Sarah: And it’s not just the accessibility of the website but the, the physical accessibility of the conference itself.
Sassy: That’s a huge thing, yeah. They’re, they’re hearing what’s being said, which not a lot of people are. The, okay, so this has been a thing again, Twitter. I, I spend way too much time on the Twittahs, as your mother-in-law calls it. [Laughs]
Sarah: Twittah. On the Twittah.
Sassy: No, but they have had a lot of issues come up, and not just in, in romance-related conferences but in cons in general, accessibility has been a huge problem. There are people who can’t get up and get their awards because stage equals ramp or stairs –
Sarah: And stairs, yep.
Sassy: – and no ramp, and person in wheelchair equals no ramp, no access.
Sassy: It doesn’t matter how much you stare at those set of steps; it’s not going to convert itself into a ramp just because you stare at it. I wish. That would be great. RWA is, is looking at this, and they’re looking at the fact that they have chapter meetings, they have a giant national conference, and they’ve had issues with hotels who don’t completely make things accessible. RT did this great event in New Orleans, but a lot of it was not accessible, and –
Sarah: Oh, yeah, you can’t take a wheelchair on cobblestones and bar hopping and –
Sassy: – and no, and this became a topic for conversation for months and months and months, was there were some major screw-ups as far as accessibility, and I’m sorry, but that’s not, you can’t have screw-ups with accessibility these days without it becoming (a) a legal issue and (b) a spot for discourse to talk about how do we fix it –
Sassy: – and when you get the blow off –
Sarah: That’s not good.
Sassy: – when you get the, we’re not going to fix it because it wasn’t an issue, well, yeah, it was. If it was an issue to people who couldn’t access your thing –
Sarah: They weren’t there ‘cause they couldn’t be.
Sassy: – that’s, that’s – ladies and gentleman, this is what we call segregation. This is what we call exclusionary. We don’t do that. And RWA’s saying openly, we’ve had accidents where that has happened in the past, and we don’t want to have that happen anymore, and we want to talk about it.
Sarah: One of the things that I find so shocking is when I’ve traveled internationally and done conferences in Canada and Australia, the level of accessibility is so much greater, and there are so many more people in various modes of, of transport and assistive transport –
Sarah: – because they can get to where they need to go. Mary Robinette Kowal did GenreCon this past year, and I was a guest three years ago? Two years ago. Three years ago. Three, it was almost four.
Sassy: She is a huge advocate and a huge voice for this, and, as it’s come up, yeah.
Sarah: And she was like, I, there are people here in all manner of assistive pieces technology to help them get around, because they can get here, because it’s already open and safe and welcoming, and it’s, and I’m seeing them because they’re here because they can be. And America, conferences in the States need to get better about this. So I’m –
Sassy: We like –
Sarah: – I am really glad.
Sassy: We, we like to look at ourselves at the U.S. – I’m, I’m going to just call us out as it is – we like to look at ourselves as this very progressive country –
Sassy: – that has a first-rate medical system –
Sassy: – and a first-rate viewpoint for people –
Sassy: – who’ve – no, we’re not.
Sarah: We’re not.
Sassy: I’ve been in Europe recently, and the, when I was in Spain it was like, oh, you know, she’s disabled. I’m not going to look twice at her. When I walk through a restaurant in the United States –
Sarah: It gets quiet.
Sassy: – I get stared at.
Sassy: I mean, like, and that’s just my daily life. I walk through CVS to go pick up prescriptions, I get stared at. When I across the street –
Sarah: And you can sense that.
Sassy: – I am the thing. Everybody sitting at the stoplight is watching me cross that street, and whether it’s because (a) cool dog and human working together or (b) oh, my gosh, there’s a blind person. Oh, why are you here?
Sarah: Why are you out and about doing things? Ah-ah-ah-ah.
Sassy: What group home are you from?
Sassy: I’m from the group home of I’m going to plant my foot in your ass if you do that again.
Sarah: What group home. Are you from?
Sassy: [Laughs] Just because you are disabled does not mean I fit into your little, neat box of what disabled means.
Sarah: Oh, God. I’m, I’m just cringing.
Sassy: I fit into nobody’s little, neat box of anything, other than my foot is going to kick your ass if you do that again, so don’t do that. We have, as the U.S., we have this idea that we are the leaders in things, and we have the idea, and we have these great laws that allow us access, but we don’t utilize them –
Sassy: – which is why service dog access is a huge problem, which is why con access is a huge problem, and the only way it’s going to change is not if we look at the law and point at the law every time something goes wrong and say, let’s leave it to the Department of Justice to figure this out. There was an article that came up recently that I can link you to, because links are good, in New York Times magazine, where a mother gave birth to a child, a 19-year-old mother gave birth to a child, and she had an IQ of around 70, and the nurse instantly assumed that disabled means you can’t parent, and the mother had the child removed for two years in foster care and fought back against the Department of Children and Families services of Massachusetts and got her child back because she had the assistance of her parents to be a parent. She had support, she had help, and she wanted to, to be a parent, and disability doesn’t make you a bad parent, but in thirty-seven states in this country we still have laws that say the only justification that they need to take your kid away is that you are disabled.
Sassy: We still live in that world, and the only way that it’s going to change is not if we look at, like, the Department of Justice to fix it; it’s going to be if we change it in our minds by, you know, romance novels and reading about it or by living it and seeing disabled people out and about, like Mary pointed out –
Sassy: – doing their lives, and we become comfortable with that, or we talk about cancer and what it does to you and that you’re still sexy as hell when you’re lying in a hospital bed.
Sassy: The only way that this changes is if we have a dialogue about it and we stop running from it in fear and shame and we stop slut shaming and disability shaming.
Sarah: I agree.
Sassy: And diversity shaming. Diversity shaming shouldn’t be a thing, but it is.
Sarah: And that is all for this week’s podcast. I want to thank Sassy for taking the time to hang out with me and talk about all the things. I will have links to many of the things that she discussed in the podcast entry on Smart Bitches, Trashy Books, and along with the show notes come all of the books that we talked about too! Plus, I’m going to have links to the different pieces of music that we talked about, should you wish to buy them, ‘cause they’re pretty rad.
The music that you are hearing right now was provided by Sassy Outwater, and if you’d like to keep up with her you can follow her on Twitter @SassyOutwater. This is Capercaillie. This is “Finlay’s” from their album Beautiful Wasteland. You can find that on Amazon or iTunes or wherever you buy your music, and I will have links to this album and the song on the show notes at smartbitchestrashybooks.com.
If you would like to email the podcast with questions or ideas or unsolvable math problems – I wouldn’t recommend that last one – you can reach us at [email protected]. We love hearing from you, and you all have really interesting email messages, so please keep emailing us.
In the meantime, on behalf of Sassy and myself and everybody here, we wish you the very best of reading. Have a great weekend.
[try to keep up music]
This podcast transcript was handcrafted with meticulous skill by Garlic Knitter. Many thanks.