I'm great. 80% done with the install, the hiccups that we had today with some missing pieces got resolved. It's looking just about finished it just has to be hung. I think I’ll have all of Sunday to do nothing which is really exciting.

Thank you. I spend like six hours braiding my mullet on the flight. So, I didn’t have to brush it or style it while I was here because I don’t have any time. I wake up and go straight to the museum and then come back home and or to the whatever this place is called. I don't know what to call it, a studio.

I’m in the financial district in New York because I can’t stay in hotels that have carpet. And so, we found this place that has hardwood floors, because my wheelchair can’t get through carpet.

That's funny. My Twitter is a messy place.

That's all I'm trying to do.

Yeah, I guess when you don’t have any expectations, you can’t really get disappointed, but at the same time it’s really exciting. It just seems kind of mind blowing to me because I’ve only had one solo show. Then I had a museum show at the MMK in Frankfurt over the summer. I just feel like it’s wild to have such a jump. I mean, I've had like a few very small shows, group shows that I was in, but I’ve not shown a lot and I can’t show in a lot of places because of inaccessibility. So, it just feels surreal, and I'm trying not to get that excited about it or I won’t be able to sleep, and I need to sleep. But I think as you start navigating these spaces, it’s really shocking to see how devalued artists are within an institutional setting. So, I’m pretty in love working with Adrienne Edwards and David Breslin, the curators, they’re amazing and I'm so grateful and honoured that they chose me.

Yes, all of my work has to do with the sort of built environment and the systemic structures that have this illusion of support, like a kitchen should be built so we can cook and feed ourselves. We have hospitals, surgeries and health care so that we can maintain our bodies and keep living, even with disease and illness. All of my work is questioning the true intent of these structures, the bureaucratic and mundane oppression inherent in concepts of normality. Anyone who exists outside of healthy able bodied, people who can walk and can stand, is subjected to the sort of mundane horrors of being unable to exist in the current spacetime fabric on this planet. Even though human beings have built everything that we currently experience, it is only built for a select few. And it’s getting even smaller, now that we have more elderly people. This sort of ignorance is inherent in our ideology of expecting bodies to be a certain way.

Except it’s not minorities, though, this can happen. I guess my point is that this can happen to anyone at any moment. And do we really accept living in a world that is so incredibly oppressive for everyone? I was a completely healthy, able bodied 19-year-old, I had been running around, riding my bike, everything. And I had this experience of having a really, really horrible accident, but the horror of it and the stress of it wasn’t just the physical experience of the accident. The horrific part was what human beings created in response to what happens to someone when they need substantial amounts of medical treatment and when they need substantial amounts of physical rehabilitation and the way that you get treated after you become paralyzed. It's all manmade. Sometimes I wish that I could create an art piece that is just the previous 10 years of my life since my accident in a microchip to download into someone else’s brain. I think all politicians would need this experience if they were to make decisions for other people, because the fact is, the people making decisions for everyone else benefit the most from their negligence, apathy and from the ignorance of other people. I’m just trying to make beautiful objects that have an emotional impact that will help people question their own reality.

I don’t understand why any of us are paying attention to any of this when food and gas prices are skyrocketing, when we’re facing climate catastrophe, like the only reason they’re pushing these things is because they know that we’re all going to be living in oxygen tubes hooked up to a computer screen because the outside world is going to be extremely uninhabitable and scary. I’m sure the metaverse or whatever Zuckerberg or anyone comes up with is only going to be a new way of mining people for their money. I just think it’s absolutely bizarre the values that we have these days and the things that people get excited about. Really, we’re facing impending climate catastrophe. And you’re going to have Kim Kardashian say we all just need to work harder. Like okay, wow, yeah, there’s nothing more important than a new lipstick line or fragrance right now. I think people really need to be careful with thinking that there’s anything positive coming from these multibillion- dollar corporations whose best interest is to keep us with the worst quality of life for the highest costs.

I steer clear from using words like revolutionary and using the term activist, and I steer clear from a lot of these words that have been co-opted by razor companies for women or whatever. I think we really need to start focusing and what I’m trying to do with my platform, and with the art that I’m making, is have people look back on themselves and on ways that they can actually start doing things in a material way to change the world. I don’t want anyone to see what I’m doing and be like, I want to be a model or an artist. Like, that’s not the point. What is the most effective way for you as an individual to produce any sort of change in consciousness? For me, being in a wheelchair, art is a very accessible way for me to do that. For instance, today, I can move my entire piece around by myself. I can rivet it and put it together by myself, with the exception of hanging it. In the conversations that I'm having, conceptual work, anyone can make work about these things, but I mean, obviously it’s not going to be very deep or very interesting if you haven't had a personal experience with the topic. I do not blame any of this on individuals without power because everyone's just trying their hardest to survive and I think it’s bizarre that people think that everyone should have the time to learn about all of this or think about all of this because most people are living day to day and barely able to get by. So, it’s a privilege even being able to understand what is happening.

Well, I think that can easily be explained in art history, when the value of art has been based on what can amass the most money for rich people. I mean I have a very idealistic opinion of art. For me, good art can be a beautiful painting or just a piece that creates an emotional impact due to its substantial beauty. But I still think the best paintings are the very political ones. Historically I think it starts with Goya, but then again, Bosch’s paintings were always so important to me, like Picasso’s Guernica, these are the sort of paintings that I think have been the most powerful throughout history. But when a large amount of the art world is focused on profit margins and money laundering for rich people, why would they value like cumbersome, large objects that are forcing a new perspective, that are making people question their privilege, art that is maybe even doing something uncomfortable? I mean, a big inspiration for my work is sort of like Félix González-Torres’ Candy Piece because it really makes you face the reality of the AIDS crisis any day of the week. In a gallery, you are faced with the literal weight and the loss of the AIDS crisis, even though you didn’t live through it. And I think that is the most powerful type of art – it sticks with you, it haunts you. That’s what’s important to me. But I think what’s important to the art world in general is the economic value that can be found in art and is in the price or ability to sell it. So, I think there are a few artists who’ve been able to get around that and who have been able to pierce through the sort of shallow financial aspects or selling aspect of art, but you know, art has always been something that rich people get to put on their walls, and I don’t like that. I like making work that is accessible to the public and can affect the public.

I faced inaccessibility because people do not think that they are allowed to live easily, or with basic human rights and I think the pain of others is what causes me to lack the care that I need daily to exist. The other night I got into the studio, the hotel- ish place and the concierge refused to open the door for me even though I had this bulky, assistive device on the front of my chair or being scared to stay alone with the taxi driver when he’s bringing my stuff as I’m opening the door to my hotel room. That’s not something that a disabled person should have to experience but my thoughts are: what happened to this concierge and what is going on in his life or his past to make him such a miserable and hateful person with no care? I think that I am not just trying to change the world to benefit me and change people’s minds to benefit me. I want people to think that they are allowed to have what they need so that they know that I’m allowed to have what I need because until everyone thinks that they’re allowed to have what they need, which they don’t, people get off to their own suffering, they get off to their own stress, they get off to their own lack. They get off to their own struggle, they get off to their own oppression.

Susanne Pfeffer, the curator at the MMK is amazing and an incredible person, she is very sweet, very dedicated. And my art being in the room with one of my favourite artists when I was 29 years old at the time is just pretty mind blowing. None of this I thought would ever happen, or never had I planned for this or could have anticipated all of the opportunities that I would get. Someone sending me an email being like would you like to be a part of this? I don’t ask this; I don’t go to gallery shows. I don’t go to art shows, I don’t network. And to be in the show with so many artists that I just really love like Jesse Darling and Park McArthur, but especially Félix. I don’t think it’s a time to just be only making things that have no deeper meaning, that just exists on a visual as shapes and colours. We’ve already done that for so long. I just don’t think there’s room or time anymore for that. Beautiful paintings can also say something important; the most beautiful pieces often do. I recently started painting again. I was an oil painter before and I was hoping to keep on painting, but it was so difficult to carry all my stuff around that I just stopped. Now I’ve drawn these utopian places I just want to live in. I think we need to respect the general public more and ourselves.

It’s fine. It’s charming or something. It’s just for myself. I need things right now that are just for myself and that don’t have so much larger content involved in them.

I love Mark Fisher. He’s one of my favourite authors. I don’t think there’s any difference between Ronald Reagan and Donald Trump. This idea as a new phenomenon is complete bullshit, it's fascism. The Nazis got the ideas that they had for concentration camps from the ways that we treated migrant workers, disabled people and Black people in the US. Donald Trump, all populist presidents, and all people who think this way are simply a symptom of this environment that we have created, and systems that that benefit people who think this way because they are able to scapegoat and blame minorities. They gaslight their way into thinking that they’re right and that because they are suffering, everyone should have to suffer too. And I don’t think much has changed. We have not been able to learn from the actions of our past and I find it extremely embarrassing.

I was friends with SOPHIE.

Most people struggle, like the concept in and of itself is able bodied or temporarily able bodied is all very silly to me because the reality is most people live with disabilities. With that being said, if you don’t experience needing to use a mobility device, needing to have caregivers, if your disability or chronic illness doesn’t affect your life in significant ways, I really hope you don’t want to take up a lot of the space in the conversation happening because people with the most needs have been consistently pushing the boundaries. And so, I really agree with SOPHIE that it’s other people’s problems to start coming up with these solutions. I find it awful that first of all as disabled people and marginalised people we’re expected to educate everyone. Secondly, we’re expected to come up with all of the solutions to solve our own problems without having any power to do so, with no help. Whilst also trying to survive systems that actively want us dead, that are doing everything they can to maintain that we have nothing or to criminalise us for trying to survive. All of it is silly, all of these labels are fucking silly because these things are social constructs, just like gender. I don’t get a choice to identify as disabled or not.

Yes, I mean, everything is so complicated in a way that there’s a bunch of people that want to buy things because it makes them feel like they’re a good person. A lot of brands capitalise off that. Then there’s stuff including Marcella or Calm, I don’t think they’ve ever used a disabled model once or really give a fuck about diversity or inclusivity at all. But I love their clothes, and everyone loves their clothes just because they’re so edgy, and people are going to still buy them. What’s more annoying to me is when a really ugly designer – some brands that I’ve done modelling for like early on in my very small modelling career – would just make the ugliest clothes and then it was like a complete tokenisation campaign, and they would only pay you like $200 for an entire like twelve-hour shoot. Or it would be free for like a six-hour shoot, but you’ve got like, all the different types of people showing up for free to be tokenised to sell some ugly clothes. I know the fashion world. I mean, it’s just I'm not even that interested in it because it’s so unaffordable for the average person to participate. It’s not even a discussion that I even care about with my friends. Everyone cares so much about appearances. I think it’s really important for there to be disabled models and for us to be able to participate in these things because we’re one in four people and we’re a large portion of the population. The hard thing is, it’s impossible, the sets aren’t wheelchair accessible. It’s so hard to get a hotel that’s wheelchair accessible, like I stayed in two inaccessible hotels, and the entire built environment is impossible for disabled people to navigate. So how are we supposed to even show up to a shoot or to a runway show or to anything when we can barely get around?

I mean, first I’m shocked, I’m in a state of shock even after 10 years. I’m still shocked at how cruel people can be and how heartless people can be. It’s amazing to me. I’m really lucky because I have really incredible friends who literally treat me the exact same, who understand my needs, they don’t make me feel like a burden. I’m really lucky that as I get older, I’m eliminating people from my life who make me feel like a burden, or who expect me to push past what’s actually physically impossible for me to do. But no, I mean, it’s really bad for your health. I think being a disabled person, especially one with signif icant mobility disabilities and a chronic illness – it’s untreated. You live in a pretty constant state of rage. It’s extremely traumatising to live in a world that just completely ignores your basic capacities to get around and like ignores the the mobile device that you use and at the same time it’s extra insulting because you’re struggling to navigate this environment that is oppressive to you.

Thankfully, I'm pretty quick to go through emotional responses and I end up just feeling sorry for people and their hatred. I feel really grateful for my life and my ability to enjoy company. Tonight I’m hanging out with someone I love so much and who’s been a great friend to me since I was in school aged 17 since before my accident. Their attitude towards me did not change at all or become weird after becoming physically disabled. I’m very lucky to have that because when people are able to see you as the same that you’ve always been you’re able to rely on personality traits to get you through these sorts of things, but I really try not to give my power away. I have like silly, small sort of ritualistic things that I do, like I make my own chai powder with all of these like adaptogenic mushrooms. Also, I love reading. I have really good friends and I have a lot of fun hanging out with them. I love to work out, do yoga and these small silly things that keep me busy. I love cooking and building stuff. So, I don’t really have a problem with coping, I never really break under the pressure. I’ve learned to be kinder to myself, and that’s helped a lot before I used to blame myself for other people’s ignorance and blame myself for the way the world is built. Thinking that I am responsible for changing it, but I physically can’t and I’m doing the best that I can to. I have two dogs, they help a lot. I think micro-dosing mushrooms helps a lot. I had a ketamine prescription for a while for my pain disease. I did IV ketamine. I tried to be very in touch with my emotions and my trauma. I’m grateful for this experience because it has taught me how to honour my experiences, my emotions, and my own struggles in a way that I hadn’t before. I honestly wouldn’t change. I’m a much happier person now at 29 years old, in a wheelchair with a the most painful autoimmune disease in existence.

Either slow roasted chicken, it’s very juicy with sage, butter and lemon, or seafood. I really like lemon and butter together, seafood lemon butter, cauliflower, gnocchi... They're both very easy to make. I’m hoping to have a kitchen that is wheelchair accessible for me in the next year, but currently it’s very difficult for me to use my kitchen so I don’t cook as much as I would like, and I mainly eat steamed broccoli. So, I’m hoping that I’ll have a lot more recipes. I love to make custard like dairy free custard and pudding. So those are my favourite things, but it’s pretty hard to cook when you can’t use the kitchens in the places that you're renting.

Oh, lovely. I gave a talk at the space about that. I was introduced to Tomasz Jan Groza, who went to the Cooper Union for architecture and worked with the vacuum formed pieces that I made. I got to work with someone who really believes in my practice and my work in a way that was extremely thoughtful. He paid a great attention to detail and really cared about the work. Working with a gallery was just not as easy as working with the museum. Working with Tomasz to build that piece was so fun, and the first time it was installed I pretty much riveted it together myself and installed most of it myself, but he vacuum formed it for me. So, it was a joyful and easy process. I designed the form and then he made the moulds and vacuum formed it so we just made a new piece that he helped me fabricate. I’m really grateful to have Tomasz in my life and for him to help me with these larger vacuum form pieces. It makes my life much easier. He also understands that I’m not allowed to make any money and that I live on SSI so funds are really short. I end up most of the time not receiving income that will kick me off my Medicaid and HSS. I can pay him the artist fees that I get. The austerity laws in the US means we’re not allowed to own any money or have any money without losing our Medicaid and our caregiving, so we’re not allowed to have any jobs or earn any extra money. It makes my life really hard. But other than that, everything’s great.