As Burning Man becomes more glamorized on social media and loses its essence of secrecy, I wonder if there’s any substance left to the festival. A festival that once allured its guests with intricate art and an opportunity to indulge in transformational experiences now attracts influencers and cart patrons in and out via helicopter.
Two art pieces stood out in my search for depth within the festival: “Am I Better Yet?” and Now You See Me. Both of these installations focus on the struggles behind living with chronic disabilities and the challenges that come with seeming able-bodied to the naked eye.
EDM Maniac spoke with Eugenia Jones, the artist behind Now You See Me, and Bex Shinn, who co-produced “Am I Better Yet?” with spouse Sasha Shinn. Both of these artists have deeply inspiring stories that captured the attention of many in Black Rock City.
EDM Maniac: What is the inspiration behind your art piece? What does it mean to you?
Jones: My journey started in the ICU. I suffered severe complications from a rare disease, atypical HUS, that was triggered by giving birth to my second child.
All out of the blue, my kidneys stopped working, and all of my other organs shut down. I lived almost a month in the ICU. My best friends at the time were the nurses trying to keep me alive. My day started with a bunch of pills, having procedures, MRIs, CAT scans, Xrays, blood transfusions, and dialysis; that was my entire day.
After I came home, it didn’t end. I kept taking the pills, still needed transfusions and dialysis. I was 37 years old at the time. At 37 you don’t think about death. You don’t really think about disability unless you have someone in your family maybe, with a disability. I was oblivious to what it was like to have a disability.
I learned that 13% of Americans are disabled. And I asked myself, do I even know who is disabled among my friends? I didn’t know because sometimes you can’t even see the disability. It was hard for me to explain to people why, at 37 years old, I have a handicap placard. And it made me think about how other people live like this. What it’s like to have a disability.
That was the inspiration for my piece—what I went through and what my family had to suffer because of that. I wanted people to be more cognitive about what’s going on with other people around the world. What does it take to lead a happy life? Or sustain any life, for that matter?
Shinn: I came up with the idea for the piece about two years ago. It quickly turned from this little idea that I had into quite a big project. The reason why the message is important to me is because I became physically injured and disabled in 2005 when I was 25, and have been ever since. It’s been a large chunk of my life at this point.
One of the questions I used to get asked at work, when I was still trying to work while injured, was ‘How are you feeling? Are you better yet?’. It got to a point where it was a question that I really started to dread. You know, people would say “Oh, are you better? Is that still a problem?” when I would say I haven’t been able to do X, Y and Z because I’m injured.
When you’re dealing with something that may not get better or the ‘better’ may not be back to what normal was originally, it can be a very alienating thing. It can be hard to explain that to people who’ve never had any sort of chronic illness. At a certain point I kind of realized that I may never get better. My better has changed from what I would have originally thought it would have been.
You know, when I had originally come to Burning Man, I was dating a guy who told me “I don’t think you could do it”. And this year was my 12th year. So, proving to myself that I could was a really big part of coming to Burning Man.
EDM Maniac: I think thats beautiful, especially now, with mental health becoming more of a priority, we don’t realize that some disabilities are invisible. People can be so cruel when they don’t know what’s going on. Even if people aren’t cruel, they may not know what it takes to show up as you every day.
Jones: You summarized that perfectly.
EDM Maniac: How was your piece received?
Shinn: It was received well. Every year that I go [to Burning Man], there are art pieces that I would love to climb or get involved with, but I can’t because of my physical limitations. I know there are other people who have even more limited physical abilities than I do, and I don’t think that’s something that’s talked about out there. Not everyone who goes out is this perfect, healthy person who can join in on all the stuff.
So, I really wanted to make a piece that made people think about what it’s like to be wondering what ‘better’ is constantly. What your personal better is. Is ‘better’ important? Is ‘better’ the goal? What it’s like living in that space of chronic illness, injury, mental health issues, all of the issues that are often invisible and how alone that can feel. If we can see that other people are going through that, while it doesn’t fix everything, it makes things feel a lot less isolating.
What I hope people take away is that they can understand that just because someone looks like they’re physically able-bodied, they may not be and that people do not owe you a detailed medical history in order for you to accept my disability; to just say, “OK, I believe you.” If people say they need [handicap placards, handicap bathrooms], let them use those things.
Generally, allowing someone to do what they need to for their own body and ability is going to help them and is not going to take away from someone else.
Jones: I was actually very surprised. I thought people would stop by and maybe take some pictures. But some people seemed disgusted by it.
EDM Maniac: Really?
Jones: Yeah, because the original rendition had syringes, pills, pill bottles attached to it and blood spatter on the frame itself. I realized that it started to resonate with some of the people. I realized that some people had to go to the hospital and got over prescribed opioids and had an opioid addiction.
Some people even told me that they were on the wrong medication for years and they didn’t know. And that medication was doing even more damage to their bodies. So, there were a lot of strong emotions.
But that’s the thing about music festivals, and Burning Man, it became such a welcoming place. I felt like I could be myself. There’s so much love there to give. And I believe that people want to give love and accept love. We just need to be more accepting of other people and ourselves.
EDM Maniac: I agree,, and to add to that, I think people need to be steered in the right direction. Any kind of education or awareness on how to love people with disabilities or how to best support our communities will be helpful. So, again, thank you for your work on this project.
How have you been since your admission? Are you living with any of the aftermaths of being sick?
Jones: I’m doing well. You know, disability doesn’t affect just one person. It affects those closest to you. It was extremely hard for my husband to be left at home alone with a toddler and a newborn and to be told by doctors every day that I might not make it.
Luckily I had such amazing friends who started a fundraiser for me to help pay my medical bills which ended up being ginormous; $1.2 million. Not everybody has the same support system. It’s interesting that there’s not one place for us to be open with who we are and the struggles we’re going through. We live in a society where we have to hide who we are, in a way; pretend that everything is okay.
EDM Maniac: I hope you know that I see you. Thank you both for being vulnerable and sharing your stories. I know how hard it can be to share your stories. You both are doing incredible work for our communities.
If these stories inspired you, consider donating to future Burning Man Festival projects to continue inspiring ground-breaking artwork.
Featured image by David Hulot
