- Disability experience is what I create my work about. I have an invisible disability. Framing something through art as a communication device so that you are experiencing an aspect of disability that you may not, as an audience member, have experienced before. I really strongly believe that art is for everyone. For a lot of people, seeing is believing. Captions were made with the support of NZ On Air. www.able.co.nz Copyright Able 2022 (UPBEAT MUSIC) Kia ora. I'm Bailee Lobb. I am an artist who makes interactive installation-based work. (UPBEAT MUSIC CONTINUES) I'm very excited to be here today. It's always lovely to see my works in person and exhibition. When you're working on these things in the studio, it's so hard to imagine them all together, so I just get super excited. I currently have an exhibition on in Queenstown. The exhibition comprises of four large inflatables. In this work, I love when it's coming up and when it's going down, cos it, to me, it just looks like kind of the rippling sea. And this is just, like, so beautiful. This fluttering as it comes up. There's several blinds which filter the light coming into the space and take it from being this very harsh white light to being a gentle, yellow-toned light. The primary reason that I make work that's interactive is because I struggle not to touch things in art galleries. I have fibromyalgia and post-traumatic stress disorder. It feels a lot like living with the volume turned up on everything. All of my senses are heightened, and because of that, I get very tired, and I also have quite a lot of widespread pain, and I tend to... need a lot more time out and a lot of rest. So, this exhibition is called In Bathing, Bask. For me, I... experience quite a lot of... overwhelming stimulation from my environment. (NYLON ZIPS) The bubble works, for me, are a stim space, and they have come about as a way to be able to go into a space that's very different from my everyday. (CALM ELECTRONIC MUSIC) I sometimes say that I'm invisible, because I have an invisible disability. And people see me, but they don't see... all of me. (ELECTRONIC MUSIC CONTINUES) The two kind of most common types of pain that I would experience on a daily basis would be... this kind of gnawing, creeping pain. The other type is... much more sudden, and it is a stabbing sensation. And that can be very random. I also get quite strong pain from touch sometimes if I'm really overstimulated. Clothing that's a bit itchy, it will actually hurt. The key things that have really helped me has been finding the right supplement regime. And I am also taking CBD, because I get quite strong muscle spasms, and then I might not be able to move. This is a full spectrum CBD oil. It... basically contains cannabinoids from across the spectrum. This one doesn't contain THC, so I can have this in the morning to manage my pain, and it doesn't make me feel out of it. It tastes really awful, like I would imagine the water at the bottom of your bin tastes. (LAUGHS) (RELAXED UKULELE MUSIC) My home is in Wellington. (WIND BLOWS) Can you open that up for me? - Yeah, sure. - My partner's name is Sarah. I met her in Sydney on Tinder. We are a Tinder success story. We've been together now for six years. She's awesome. I love her a lot. (CHUCKLES) - I would describe Bailee as really clever, very hardworking, funny, very direct. And sometimes the directness is what makes her funny, because she'll just bypass any social pleasantries and just say exactly what she means. And it's really hilarious. Her art is the centre point of her existence. I think art is therapeutic, but also showing the world how she experiences things. And I think that that's what makes her art so powerful and so immersive. - I feel like I've got kind of a good method for the gradient dyeing now. 'Sarah is really supportive of me, 'especially with helping me 'to manage my disability. 'She can tell 'before I can 'if I'm starting to go downhill.' ...not coming out as regularly. - Oh my God. This is really good. - (CHUCKLES) My art in the early days really focused on mental health and more experiential elements. Art has the capacity to communicate things in a way that sometimes language can't. This piece here is actually a wearable. I was looking at invisible illness and mental illness. One of the suits had around 5 kilos of salts across the body. And then there was another 3 kilos in the tail, so that when you moved, you feel kind of more compressed around the body. It would start conversations. People would be looking at them. 'That's heavy. How is it heavy? 'It was super light, super floaty. Like, just super fun.' And then they would be talking to someone who had had the heavy one and realised that even though they all look the same, the experience was vastly different. (UPBEAT MUSIC) (KEYS JINGLE) Today we are in my art studio at Toi Poneke in the heart of Wellington. I've done a few things to my studio and to my process that make it more accessible for me. Part of living with fibromyalgia is that I have to kind of consider how I will do activities. If I stay in one position for too long, I get very stiff and extremely sore, but what I try and do is kind of make it so that I'm never still for too long. So I do have this set-up here on the wall, and then I'll go and sit for a bit, and then I'll be back up and standing. Like, for me, accessibility is more about the whole process of how I'm doing something and how I'm interacting with the space. So, like, adding the projector was life-changing for me, cos when I'm crawling around on the floor, I generally will end up pretty quickly with a sciatic nerve pinch. I can't have one day in the studio and then three weeks in bed. It doesn't work. So rearranging things has made it work for me. (INTRIGUING MUSIC) (NYLON RIPS) (SEWING MACHINE PULSES) The inflatable part of my practice is around creating spaces that nurture me and allow me the space to process. As part of the exhibition in Queenstown, it allows people to experience something outside of their comfort zone. Sometimes it's very confronting. And so I think it reaches people in a different way. (INTRIGUING MUSIC CONTINUES) (LIVELY MUSIC) - We're just stuck. Um... I'm working on a new work that uses multiple colours into a gradient fade from one colour to the next colour and then a pattern over top in a third colour. This is my mum, Terry. We're gonna do some dyeing. There's a lot of colours. Is that the teal? We're gonna start. You wanted to do violet... to teal with an emerald overlay? - Yep. - OK. - Oh, look at this. I love. I love those two colours. - It would make life a lot easier if people were able to allow people with invisible disabilities to live the lives that they needed to, to have the accessibility that they needed to. But the only way for those things to change is for people to start to have an understanding of how environments affect people with disability. I really hope that's something people get out of the experience of going in my bubbles. It's really part of a big experiment to understand how people respond to space and how spaces make people feel. For some other people, they also do that same specific thing, which is, you know, to recover and feel less pressured by things. It's the stimulation, but then there are some people that really react, and they don't like them. They feel, you know, like the colour's yucky or they don't like being confined in that space. So, from green to... orange pattern. - When she exhibited here with her pods, and there was a lot of parents with autistic kids and a lot of different disabilities that you can't necessarily see. This must be the windiest clothesline in New Zealand. Seeing how those kids reacted, it was amazing. (CHILL MUSIC) - They managed to detach these from my body accidentally, so I'm gonna... 'One of the reasons that I'm so excited about being the first exhibitor in this space 'is that it's enormous,' and a space like this really lends itself to installation work. This little scrap will be here. 'When I think about how people respond to my work, 'it's that moment of, "What did you think of that? '"How did that go for you? How being inside a completely blue environment '"or a completely orange environment made you feel?" 'and opening it up to an audience. 'What I'm really doing is one,' sharing that experience and saying you can make what you want from that, but two, encouraging people to think about environment and space. (INTRIGUING MUSIC) (PAPER TEARS) I do my scale models using paper-mache. Once it's white, I will go through and draw on the piece all of the seam lines. And then I will go through and write unique numbers on each of them. Once I've done that, I will create the pattern map for it. And the pattern map is kind of like a mathematical formula where I am working out how I will put it back together. This process for me is a thinking-up-front process. When I create the pattern map, it's hard work for me, and I can't do it if I'm feeling foggy. I have really, really strong brain fog and cognitive impairment, and it is really hard to remember to do things ` to go to appointments or to make appointments. It's hard to think about what food should be eaten, how to remember to eat at all. So the brain fog is really... debilitating when it goes on like that. It's definitely good for me to do this process, because it means that I can work in the studio on days where I am really foggy, because I'm following the instructions that I've already laid out for myself. I don't have to think too hard about what goes where and what order to do things. (CALM MUSIC) - Are they due on this? - Sarah is filled with light. She's really funny, and she makes jokes a lot. She's quite mischievous. - I think it's frozen. - (LAUGHS) She's also done more for my sleep than any medicine I've ever been on. When I first met Sarah, I was... quite strongly insomniac. So I would go to bed, but not really go to sleep. And I might get two hours of sleep sporadically throughout the night. And if I have a night of poor sleep, then the following day my pain is worse, my cognitive function is worse. I struggle through the day. I take quite a few tablets each day, and most of them non-prescription. My kind of most important ones would be... the 5-HTP, which really helps reduce my pain levels. The cherry. That one's really helpful for my sleep. I also have a B Complex and then an adrenal support, which is like a sister tablet to the 5-HTP. And the B Complex is really just because vitamin B is often low in people with fibro. And so it was a good recommendation by my doctor. Then I have prescription ones. A standard antihistamine. An antihistamine nasal spray, because I'm, like, extra allergic these days. The THC is... an antispasmodic. It helps a lot with cramping pain. - Oh, it's really hot. - Hot. (CHUCKLES) - When she was first diagnosed, neither of us really knew what that meant. But over time and with work, we both understood what Bailee needs to be able to recover so that she's able to fully recharge and then apply herself as an artist. (UPLIFTING MUSIC) - We've got momentum, New Zealand. So where to from here? To amazing places, greener places, places of opportunity, technology, possibility, sustainability, every ability, Places that are for all to enjoy. Yeah, everyone ` for her, for him, for them, for adventurers, for explorers, for our mokopuna and their mokopuna. Let's go with freedom, confidence, kindness, love. (CHUCKLES GENTLY) And with our sense of humour, let's enjoy the path forged by those that came before us but also find new ones, maybe better ones. Life is our journey. Aotearoa ` our magnificent waka. We have the wind at our backs. Haere mai, New Zealand. (CHIPPER MUSIC) - The best way for Bailee to maintain herself is to have relaxation activities and just to also keep her body very healthy. So the things that we do, like cooking together or swimming in cold water, those things, I think, really help reset her and take care of her body. You good? - Yup. I'm ready. - Cold water swimming came about because I like to swim, and I wanted to try to get used to cold water swimming. It turned out Bailee is a lot better suited for it than I am. It really does reset you, as well. If you have had a bad day or if you have pain, then shocking your body with cold water can really help. - Warm now? - Oh, my hands are still cold, but. - Love being in the water. It's cold, but it's nice. I don't mind the cold, and I can stay in for a really long time. (TRANQUIL MUSIC) It definitely seems to work. I mean, put it this way ` I had a really bad headache and a lot of pain down one side before I got in, and now I feel great. So it seems to kick something in. I've read that it is your parasympathetic nervous system taking over... - ...all your survival instincts, you know? - (LAUGHS) (TRANQUIL MUSIC CONTINUES) (MUSIC ENDS) When I was first diagnosed, I actually had significantly less activity. I was having a lot of time in bed. That was because I was in a lot of pain. But I was reading that pain as a warning that I needed to rest. And with fibro, to a certain extent, you need to learn to move through the pain. It's not classed as a degenerative condition. But the most important thing is maintaining my level of activity. And I've found that not only does it help me with my fitness, I've more recently found that going on kind of a longer bike ride, a very fast bike ride, is very good for me in terms of stimulation. I can let go of a work day or a difficult, stimulating experience much more easily if I go and have a bike ride. I am here to do some testing of my two existing prototypes. Key things I'm looking for are where the failure points are within the larger work. What the minimum and maximum sizes are for the seam lines, which is where the air fills in between. The biggest concern for me is this exceptional lean. In the model that I made of this piece, the structure actually stood... like this. I'm really, really happy with the dye work. This is dye work that I did in my big pot at home. So, this is the model that you've seen me working on in the studio. It's for the newest prototype, and it's gonna keep the work upright, but also give me a better shape, the shape more like what I'm modelling. So I'm quite excited to see how this one turns out, because it's gonna have panels that are all just a little bit smaller than this one, and it should be much more structurally sound. (LIGHT MUSIC) I'm starting to get a little bit nervous. We've got 250 people coming in today, and I'll be speaking to 80 of them in two separate sessions. With this particular group, because they are working in the building industry, I'm really hoping that we'll get some good conversation going around the future of accessibility, around universal design and creating spaces that meet people where they are, rather than making people work really hard for the spaces that they occupy. I'm Bailee. I am a queer artist with disability, and I make large-scale installation work. If you can make something that is able to be experienced by the broadest number of people possible, then you're doing a really, really good job. 'My absolute wish 'would be that we actually teach accessibility in art schools.' That's something that all artists would benefit from. - My hopes would be that she'd be able to take her shows internationally. I would also think it would be amazing if she could create some of her bubbles for kids who have disability and who need spaces to self-regulate. - When I started on In Bathing, Bask, I've really proven that I can make at the kind of scales that I've been wanting to make it. And now I wanna keep pushing. And I think it's probably going to be bigger and more and, (CHUCKLES) like, more me, more everywhere. Yeah. Captions by Jordan Waetford Captions were made with the support of NZ On Air.