Jess Karamjeet: Chronic illness, boundaries and her new show, RAY!

RAY! will be on at Tāmaki Makaurau's Q Theatre at 6pm on 15 & 16 May. 

Postcast transcript:

Eda Tang: All right. Welcome to the show, Jess. Can you introduce yourself? Tell us about who you are.

Jess Karamjeet: Sure thing. I am Jess Karamjeet. I am a stand-up comedian and a screenwriter and a comedy producer as well. So I have a show coming up in the New Zealand Comedy Fest next month, at Q Theatre, and it's called RAY!, and we had a chat about that and my experience, lived experience with disability.

ET: Awesome. So what makes the show different and what's, what's a RAY! about?

JK: So RAY! is my third show. My third hour show. The way it differs from my previous shows is it's still musical comedy, but the music is kind of elevated. I've got some surprises that, maybe I'll give you a spoiler about, maybe I won't, we'll see. And it's different in that it, it explores my experience with disability, but in a different way to before.

JK: And I think in prior shows, I would kind of work a little harder to explain things for the audience. And I now feel where I am at in my artistry is that I don't really need to explain myself. And if people want to come with me on the journey, they will. And yeah, it's just a completely different take on, on my life. But the actual show is set in, mainly in Thailand. So it's about a trip I took with my mum at the back end of last year, and she's a 69-year-old Punjabi woman, and we were on this party island in the south of Thailand. And it's about the kind of wacky, strange situations we found ourselves in, and how our relationship grew in spite of, like, weird stuff. RAY! refers obviously to the kind of sunflower of disability, ray, sunlight and that kind of thing. But it also refers to stingrays because, yeah, really like marine life. And it's kind of one of my spins. True. Yeah.

ET: What's your favourite marine animal?

JK: At well, at the moment is the stingray. Yeah. It wasn't before the trip to Thailand, though. Before it would have been, probably the manta ray. But I also really like, I like, but I'm frightened of triggerfish.

ET: What is the triggerfish?

JK: I'm glad you asked Eda, because I mentioned it in a comedy show before Christmas, and the audience did not understand what a triggerfish was. So it's basically, the female triggerfish have a cone of, sort of, protection for their eggs. And so if you're a diver scuba diving and you swim over that cone, you're going to get attacked.

JK: And in previous years, the biggest - I've been diving for six years - the biggest triggerfish I ever saw was kind of this big. But in a previous trip, I was attacked by two, and they were, like, this big, and they've got big sort of teeth in their, their, their nasty things.

ET: Is there anything that frightens you more than triggerfish?

JK: Um. No, I've kind of gotten over the fear. People often are frightened about sharks, but if you see a shark in the ocean, generally it's just really, really cool. And yeah, their, I've not seen big ones. I've seen reef sharks. And they’re just go on about their day just having a little swim.

ET: Yeah. Yeah, I think they're over, I mean, they’re misrepresented, right? You know, all about that. Completely.

JK: Yeah. And as a screenwriter, I'm really hot on representation and actually making sure the stories you tell are accurate and are good. And so I've got a big beef with Jaws because, yeah, that just has changed how people see sharks.

ET: Do you see that happening in the comedy scene. Like what's the what's going on representation wise in comedy.

JK: I think people are a little bit more comfortable with representing themselves authentically. I certainly feel that way. And I talk about my intersectionality as a queer, pan-Asian, disabled person. Yeah. I think there's, there's a lot of an appetite for comedy that doesn't take the traditional norms. That is, from a cis-man who's, you know, here, Pākehā, or worldwide in that similar vein.

JK: And so I think, yeah, the more we put on that comedy and the more audiences come, we can prove to venues or producers or whoever, that there is an appetite. And so I do that with a show called The Asian Comedy Takeover. I produce that show and it's a mixed lineup show, and we're on at Basement every couple of months, and we just bring in, yeah, full houses every time.

JK: And it shows, number one that you can have, like four women who are from similar places in the diaspora, but they all have unique perspectives and they have unique stories and jokes. And I love, love, love doing that. Yeah. It feels good.

ET: Nice. Whenever like, so you, you identify intersectionality within a few different communities.

JK: Yes. Yeah.

ET: How do you go about that work without feeling like you have to extract those parts of your identity for, to prove a point or to to be an object of curio for someone else. Yeah, sure.

JK: And I think that's kind of where I'm at with this new show is that I am not explaining what fibromyalgia is or explaining the depths of, of my other neurodivergent brain. I'm just sort of mentioning it. And I if the audience with me on that journey and, and laugh along, then that's great. But it doesn't feel like I'm certainly not the butt of the joke in these situations. And it feels quite empowering to be able to convey those truths. And it feels quite empowering to be able to convey those truths. in a fun way. That doesn't sort of take away from me. I feel like if comedy and comedians ever are in that spot where they feel a little bit of their soul is being eked away each time they are on stage, it really shouldn't, shouldn't be something they continue. There's a fun little fact as well around, if you are, well, if you're anyone, but especially comedians, if you say the same line, you know, 30 nights in a row at a comedy festival, you're going to start to believe that that line is somewhat true. So if you're talking down orbeing disparaging about yourself, it can have long term impacts. And so, yeah, I'm really cautious and sort of protect my space a little bit more with how I perform.

ET: It sounds like there's a lot of work that needs that you do like not just putting together a set, but lots of kind of learning about yourself and how you make sense of what you've been conditioned to. What are you learning about your disability at the moment?

JK: Well, the first thing I've learned is that I have a few. I'm when I originally wrote Grief, Sex, Race, which was my first musical duoshow, gosh, I don't even think I'd been diagnosed as neurodivergent. I knew I had fibromyalgia, and was diagnosed in my mid-twenties. After trying to complete a Master's degree in screenwriting. And just. I used to work at a craft superstore, and I would watch the sweet old ladies who are my colleagues, and they would go up and down the stairs, you know, multiple times a day. And I couldn't even walk home after a two hour shift and really sort of having my life sort of grind to a halt physically, and with pain levels. And so, yeah, I feel like I have my head wrapped around fibro and what that means to me to have this chronic hyper muscle tension that impacts like internal organs as well as mobility. But yeah, my, my show is about actually being diagnosed as neurodivergent, but also having acquired neurodivergent over the last six months. And so that's been a whole new, yeah, roller coaster to be honest, but I have found the light and the joy in it. that means I'm doing this comedy show and we'll refer to it and feel like comfortable and empowered doing that.

ET: Can you tell us more about acquired neurodivergence. This is completely new to me.

JK: Oh interesting. Okay. Oh yeah. Obviously we, we know that certain things in the neurodivergent umbrella are from birth. But certain things can happen due to an incident. For an, an example of this is if someone has a brain injury, that would be a form of acquired neurodivergent. So, yeah, it's about having the kind of care and protection around that.

JK: And, I've really had to change how I walk through the world, over the last six months. And so outwardly, I kind of seem like I'm tucking all the boxes. I'm producing the comedy shows, and I'm writing for TV shows and, but sort of on a truthful level, max, I will do five hours a week of work.

JK: I will see, over the last few weeks, you know, oh, the last few months, three different therapists for different, certain things. And I'm having the kind of care and attention, that, honestly, I could only have dreamed of because obviously therapy can be a high price tag and so on and so forth. And it's quite a privileged thing to be able to access.

JK: But I was at rock bottom, and I needed to figure out a way to actually get a new normal. Yeah.

ET: And that's a huge change. Yeah. Like is there that capitalist bone in you that it's like, “maybe I'll just jump on my laptop before bed and just smash out a few things”

JK: Honestly. I mean this maybe this comes with mostly being my own boss. I'm okay with having a really low income because I can still have a safe, dry household and like we were talking about, I've just moved house, and, thosethings are my priorities. I know we were talking earlier around pre-interview stuff around, you know, is disability and productivity a relationship that's possible. And that's my, my real thought on that is if you're driven by a kind of capitalist mindset where earning X amount of dollars is your priority, then I don't know how my experience with disability could work with that, but for me, my productivity, I could be more productive in those five hours than if I'm kind of trying to drip feed, or if I'm trying to. Yeah, really go above and beyond because I will end up more burnt out and I will end up more physically in pain or having a deficit of days and energy. Yeah that's true.

ET: What are you, I guess you can think of productivity and a different lens, rRight? Like rest as productive. Yeah. What, what are you getting out of that rest instead of you know, an output that you can deliver to your boss.

JK: Yeah. And that's the real difficulty is that so many people think that productivity is, is output based. Whereas for a lot of us, it's about how we actually recharge and, and figure out a way to just, have better boundaries. Again, this was something that I accessed. Shout out to the Inner City Women's Group of Auckland, because they run a really good eight week course that's about communication and boundary setting. And yeah, I've just really learned how to get better at saying no and oh, get better at, giving a slight explanation, but doing so without shame. You know, you and I having a chat about this podcasting day and me going, okay, I'm moving house three days before, so maybe I'll give myself the three days to recharge, you know.

ET: How did that recharge go?

JK: Well, I was on my hands and knees scrubbing the floor of a flat that's not been cleaned in seven years before the tenancy ended. Um so, no, my rest dat did not go to plan. My rest day was eaten up in that example. But, I knew that I had the wiggle room over the next couple of days where I could be a bit kinder to my body and actually know that, you know, my previous flatmate her appreciation for my six hours of hands and knees is important to me, so it's kind of finding that balance, really. Yeah. But also, I'm a damn hypocrite. We all are. We all are. We really are.

ET: I guess it's like the, the world isn't just you and your work. How do you manage your energy with the people around you and other joys and loves in your life?

JK: I feel like I'm really lucky in that I the joys that I get through creative output and through nature and those two things are really, really good for someone in my current sort of recovery phase or just, you know, with my fibro. So things like playing guitar or singing or, yeah, going, going for short walks, and kind of connecting in that way. This is not a paid advertisement, but I'm super, super keen on this app called Finch. It’s a little birdy. And I have to look after it every day, and I look after it by doing things for myself. So if I get out of bed and I manage a shower, or I manage to acknowledge my emotions on that day, I get a little ping and some gemstones. And then I buy the little bird, some cool outfits. And yeah, it's just this really weird way to care for ourselves without that sort of ADHD thing where you, you rail against the things you should do. Yeah, it's a way to kind of gamify my mental health. And honestly, I'm on day, I think I'm on day 50. And it's been one of the key things over the last few months that has really made an impact on my abilities.

ET: So yeah. Interesting how we're motivated by our care for a fake bird.

JK: Exactly. Right. Yeah, yeah. That's completely it It's sort of like the nurturing, almost like a pet. And they're great. You know, they, they just give you that joy and it's a good stim to stroke them and. Yeah, yeah, yeah I'm a cat lady.

ET: Me too. Yeah I think you always find, you find each other, you gravitate. Yeah. Yes. Yeah. It's really cool to hear you, like, being comfortable with expressing your boundaries and knowing how to look after yourself. And how, how is that perceived? And how is that taken by people on the receiving side of that?

JK: Yeah. I think when you’ve been masking for 30 odd years, as I have, it's really, really hard and I find myself deferring a lot. So it kind of means a lot that you acknowledge. “oh, you know, you seem to express good boundaries.” It's something very new for me. And I still have that neurodivergent behaviour of over explaining or justifying.

JK: But actually, I mention him in my show. I've developed a really great relationship with my old flatmate, who is on the spectrum with me. And, you know, mirrors up our sort of idiosyncrasies. And he's been really good at being an example to me of someone who just says no. And I did, we had a discussion where obviously gender takes a big role in that and, and race.

JK: And so on and so forth. But I am looking at people in my life who are good at that and are good at observing boundaries and don't try and overstep or push. And it's not always well received. But I think the more I'm transparent about my needs, the more people kind of need to observe them or they're just, I can swear, A holes, you know,. That's kind of it. They, they, if they don't observe those boundaries or requests or concessions from my body, then they're probably not someone I should have in my life. And that's been the real test. And that's also, yeah, kind of what the show's about. Yeah.

ET: I relate to you as, like you, as an Asian woman. I know what you mean when you say that there is something gendered and racial about feeling like it's an extra step to be able to express your boundaries. But for those who don't have that experience, can you explain that a bit more?

JK: I guess we, do you know, different cultures have different expectations around the way we might, as women kind of fawn or be people pleasers as another way to express that. And, yeah, just having a clearer link between what we need or need or want, which for a lot of neurodivergent people or disabled people is really hard to access. Often we don't know what I need because we're so on the wheel, and that we never take the time to actually sort of take stock.

ET: Now we were talking about energy. So for many people, you’dd present for someone with, invisible disability. How does that go when you, you know, you express your boundaries to people and they're like, “oh, is she just being dramatic about it?”

JK: Oh yeah. Yeah. I mean, there was a reason why I trained for like 12 years as a drama practitioner, as an actress. Yeah. I think that people are really quick to assume that because I'm slim, etc. and seem able to, to perform tasks that they could perform, that I should really easily. But my mobility has actually declined in the last year to a point where, you know, I'm going for like weekly physio to try and get my mobility better. And so I guess sometimes it's about visual cues. I made a bracelet for myself. Please don't hate, some people will, but I went to see Taylor Swift last year in Europe with a friend. And the thing was to make friendship bracelets, and there's a line in one of her songs, it’s “wet through my clothes, weary bones caught the chill". And so I made a bracelet that said ‘weary bones’. And I actually had it on, but I threw it away because I'm going to play a guitar, and I got sensory ick, as I often do. But I feel like having that bracelet is a good visual cue for me to remind me of those sorts of boundaries, but also if I convey that to the people in my life and go like, hey, this is a really good way for you to know that my spoons are pretty much depleted today or what have you. Yeah, yeah. So the intention is there when I made that bracelet six months ago. Yeah. But, actually putting it into practice is something altogether different. Yeah. But, yeah, I feel like I'm working on it. I've like, this has been my main sort of focus for the last six months of this recovery period is figuring out how to be better, because for the longest time, I took people's outward perceptions of me as, yeah, as as the final, point of a sentence.

ET: Yeah, yeah. And really good to have a reminder, because I think with a chronic illness especially, it's, you have to just let that be your baseline existence, right. Whether that's pain or fatigue. And then, you know, you get to a point where you can just forget about it and think that you can, you know, work this eight hour day.

JK: Yeah. Yeah.

ET: Especially if it's something you can't see as well.

JK: Yeah. I, I was seeing a therapist last year. Coincidentally, just around some chronic pain stuff and the way that they expressed, I think we were often given the impression that we should just sort of hear our pain or feel our pain and ignore and just keep going and keep going. And they explained to me that actually, the more you do that, the louder your body shouts. And so that's kind of where I'm at now with mine, is that my body had had enough. My body went, absolutely not. And unless you work on these things and have like a real commitment, we're not, we're not going to be able to keep going. And that felt really transformative. And needed to happen.

Yeah. And, I don't know I, I'm pretty open on my social media. You know around energy and spoons and mobility and stuff like that. But yeah I still, I don't know whether people receive that with an open heart and an open mind. But also I don't, I don't care anymore. Like, I'm not responsible for how the world perceives me. Ooh, maybe you won't cut this out. I won't said this in an interview and it got cut, I think, because people think it was so desperately sad. But a physio once told me I have the kind of body and mobility of someone in their 80s. And for me, that's a good way to express to someone like, “hey, you might look at me and think this, but really it's this,” and like, I'm okay with that being the language I use to express my levels. And that's an eight year old who's not running a marathon. I'll just put that caveat.

ET: It's giving witch vibes it’s like.

JK: Oh, you reckon?

ET: Yeah.

JK: Like I can transform. Yeah, like take off my skin when I walk through the door and stop masking. Yeah. No, but and that's it as well. It's like if I was not biracial, if I wasn't South Asian, I would look my age. Like a few days ago. Who was it? I can't even remember who it was. I was in some sort of medical thing or whatever.

JK: And the guy said to me, you, “you look half your age” like that. And I was like, “I'm 35.” And he was like, “yeah, you look half your age.” I don't feel it at the moment with all the bags from the moving. But yeah.

ET: It's hard to be hot and disabled, I guess

JK: It's hard to be hot and disabled, I guess. This is the bottom line. Maybe that's the name of this podcast. That's the name of my next show. It's hard to be hot and disabled. Do you think people will come through the door to watch that?. They won’t take you seriously. No it's so silly. It's like. But also, I'm sorry, I know that was a quip and like that was fun and funny, but even like our perception of hotness, I'm like, okay, so I'm visibly thin. That's because I don't have muscle. That's because I struggle when I wash my hair. That's because I have difficulties hanging my washing. That's because I'd love to go to the gym and get some gains. That's because I'd love to go to the gym and get some gains. My housemate at the moment is like jacked. Yeah. Even though she's like a sweet little, little Chinese kiwi and you know, my, my aspirations towards that. And yeah, just in the zeitgeist I've been traditionally ‘attractive’. But also at the moment, we’re kind of veering more towards like fit bodies. And I, I don't want to be fit. I just want to be able to wash my hair.

ET: Yeah. Just to be without pain.

JK: Because there’s a lot of hair, you know.

ET: Yeah, yeah, yeah. How do, how do people get into comedy? Because, you know, it's I don't think, you know, at primary school and teachers ask, “what do you want to do when you grow up?” You don't really hear kids saying, like, “I want to sell my soul on stage.”

JK: You know what? I did a test when I was 15 for careers. And it came out that I would be a good prison officer, which let's just say now let's, you know, let's not privatise prisons and have prisons, they’re just disgusting things. But, I'm glad that wasn't the career path for me. How to get into comedy? Watch comedians, go see live comedy, and kind of like, find spaces that are ones in which you feel safe, and where you can express kind of a different side to you.

JK: And yeah, that's why I created the Pan-Asian Comedy School so that I could sort of nurture up different voices that, either in their personal lives or professionally, they feel like they just need a little something more. And a few of them have, have gone on, you know, ones working on her hour show at the moment and yeah, that there's a real buzz, and a sort of power that comes from trying it and just giving it a go. And yeah, comedy is, is one of the things in the world that people are most frightened of doing. It's public speaking. But if you can find people where you can do that in a more safe environment for you, whether that's because you are intersectional or you have access requirements, like it is, it is possible more than it was, you know, a decade ago. And yeah, I also want more friends. I want more people in the space who, who are nuanced and who kind of, yeah, want the opportunity to, to do that. And I know it's not 100% accessible. But even for me, like I don't really do a lot of standing in my standup comedy shows anymore because I get too fatigued. Or I'll move things like my tech run so that I don't do it on the same day. You know, there are certain things that you can work with with show producers, neurodivergent sensory issues with the lights. So now I never perform in the audience in complete darkness because then I get a void and I get eye issues.

But yeah, there are different things like to, to try and mitigate that. And I did the Disabled Artist Festival of Theatre in Wellington and in November I had a NZSL interpreter for the first time. So that felt so cool. They got me to play them the songs in advance of the show. And then they were like what's the better word for this weird, quirky word that I'd used in a song or whatever? And like the storytelling through that felt really cool. So yeah.

ET: Can you play us a song?

JK: Oh yeah shall we do a song now?

ET: Yes please.

JK: Okay all alright. This is an exclusive. This is from the show RAY!, which will be the 15th and 16th of May. And I wasn't going to do a spoiler, but I'm impulsive, so, I decided about an hour ago.

ET: Aren't we lucky?

JK: I'm not going to give masses of, masses of context for this song, because I think it's funnier that way. And I'm not even going to tell you the title because that's a spoiler. Alright, here we go. Well, I’m walking down the street and it's late at night and I'm feeling kind of good and my body feels light, but my bag is kind of heavy and the straps are digging in.

There is a solution there's no way I cannot win. And I'm gonna tie the flappy straps around my waist. It's a logical epiphany smile’s on my face, but then the straps I can't undo. My panic's rising. What to do? Because the straps I can't undo. Panic's rising I'm gonna poo-oo, in the street. Yeah, I'm going to shit myself on Queen Street.

Stuck in my bag.

Stuck in my bag. Yes, I know it's just a bag. But I can't help it feeling sad. I hate the feeling on my skin. Like I'm being stuck with pens. My senses are on overdrive. I'll make a joke if I survive. Strangers help me to get free, I'm so ashamed. Don't look at me. Strangers help me to get free.

Yeah I'm so ashamed. Don't look at me. Strangers help me to get free, I'm so ashamed, don’t look at me. She says, “oh, happens to everyone.” And I said, “really?” She says “everyoooone.” And I said, “really?”

Stuck in my bag.. Stuck in my bag. And I'm not going to do it. The very, very, very end of the song because that's a spoiler. But there you go. That's my little neurodivergent vibe.

ET: Awesome.

JK: Thank you.

Subscribe to our weekly newsletter, The D*List Delivered!