‘Tangled’: Madison Rubenstein paints what it feels like to live with invisible illness

In celebration of Disability Pride Month, throughout July MPR News is featuring stories about Minnesotans with disabilities who are making an impact. See more at mprnews.org/changemakers. 

Madison Rubenstein is a painter and a visual artist from Bloomington. In their airy studio at the California Building in northeast Minneapolis, Rubenstein creates large-format paintings of twisting bodies, bold colors and swirling abstract shapes. 

Their artworks are based on a lifetime of chronic illness and disability, invisible conditions that they now know to be fibromyalgia, hypermobile Ehlers-Danlos syndrome, PTSD and postural orthostatic tachycardia syndrome, also known as POTS. 

Rubenstein often says they paint how it feels to inhabit their body, an ever-changing experience of limited mobility, chronic pain, mental fog, anxiety and other challenges. They also paint to imagine new futures for themselves and other disabled people, where all needs are met and they can not only survive but flourish.

In 2023, Rubenstein was one of the first artists to receive the Midwest Award for Artists with Disabilities from Arts Midwest, which culminated in their first solo exhibition, “Too Much.” Rubenstein is also participating in “The Art of Disability Justice Now,” an exhibition that runs July 19 to Nov. 3 at the Mill City Museum in Minneapolis. Rubenstein will also participate in the California Building’s open studio events this fall.

Editor’s note: The following interview has been edited for length and clarity.

Where are we and what does this space mean to you?

Rubenstein: We’re currently at my painting studio at the California Building in northeast Minneapolis. This space is so important to me because I need a dedicated space for my creativity.

It’s a little bit of a sanctuary for me. I try to come here every day if I can.

Tell us about your art.

There’s a lot of really bold, vibrant color. There’s a mixture of big sweeping abstract shapes with maybe the hint of an arm or an elbow. The space is kind of chaotic, but it’s also thought out in these paintings.

That interest in entangling abstraction and figurative is what it feels like to be in my body. It’s this kind of ever-changing, ever-morphing thing. I often feel like a tangled mess just trying to live in the world. 

I make artwork about my experience living in my body with chronic illness and disability. Over the years, as I’ve been making this work, it’s been really inspiring to connect with other disabled artists who are drawn to some of the themes in my work. Sometimes I feel like I can tap into something that kind of resists language. 

It was always my dream to make this my vocation, my career, and a lot of that has to do with growing up and dealing with chronic illness and a lot of health issues. I had a really hard time figuring out how to express and explain what was going on with me. 

I feel very lucky that my parents noticed that I was really drawn to art, and they really nurtured that for me. I was able to use art as a tool to express what I didn't have language for. 

How would you describe your experience with chronic illness and disability?

I think that I’m finally now getting some answers, you know, 27 years after being diagnosed. When I was a kid, I was diagnosed with fibromyalgia and symptomatic joint hypermobility. There has been a lot more research and understanding of what those conditions are.

Part of the health challenges I have are my muscles don’t function properly. Anything that I do physically — standing, walking, taking stairs — I have to think through it as I’m doing it. It takes an incredible amount of focus. If I’m experiencing other symptoms that are making it difficult for me to connect with that part of my brain, it’s not going to be a good day for me.

I also have post-traumatic stress disorder. So that is what they call a comorbidity with a lot of these diseases. It’s going to impact neurological function.

Part of how I manage PTSD is I have to change my perception of my reality. I need to create new connections in my brain that weren't there before. That means taking risks, it means experimenting, it means prioritizing joy and pleasure. Those are things that I bring into my art practice. 

Painting at the scale that you do is physically taxing for any artist. Do your disabilities pose any unique challenges for you as an artist? 

Yeah, absolutely. 

[Rubenstein points to a massive painting-in-progress nailed to the studio wall]

I had to have help getting this piece up in order to work on it, because it involves me being able to crouch low, and then go up on my tippy toes to nail it around the edges. That transition from being very low to the ground to high, and doing that over and over again, causes symptoms that make it very difficult for me to keep working that day.

Anytime I have to transport a painting, or anytime I have to move large paintings that are just paper, I have to ask for help. That has been one of the hardest things for me to start getting better at. I’m a very independent person.

I spent a lot of my life trying to force myself to fit into this certain box that was like, a palatable, disabled person, and it was making me sicker. So many people that I love are disabled, and it's a very relatable struggle.

That’s the thing about everything I’m saying: None of this stuff can be achieved alone. That’s something that I think disabled people really understand, and it’s something that they can really offer to society, that doing things alone isn’t something you always have to be proud of. In fact, a lot of the most important things that need to get done you need community for.

Do you have any heroes or mentors who also live with disability?

I have a mentor, who’s a local disabled artist and writer, Alison Bergblom Johnson.  I don’t just paint paintings. It’s also social media, it’s marketing, it’s promoting yourself, it’s applying for things. It’s web development, it’s spreadsheets and budgeting.

Working with Alison, I’ve been able to learn a lot of those skills, but I’m learning those skills in a way that is very accessible to me because of who Allison is, and the work that she does in the disability community. She is not only teaching me the kind of foundational tools of running a business, but how to run a business when you’re sick, and how to run a business when you need extra support and how to set expectations for clients.

What is something you think everyone should know about living with disability, or perhaps specifically an invisible disability?

One of the most important things that people should understand about disability, especially for people who have invisible illnesses, is that that person is the expert on what’s going on with them.

It’s very common for outsiders to want to give advice and make suggestions without knowing very much. I think that comes from a place of people wanting to help. It comes from a place of wanting to not see somebody they care about suffer.

Everybody is going to become disabled at some point in their life. It’s a natural part of being a human being. In society, it's treated like this unnatural thing that happens.

If you are having some strong feelings about what somebody’s going through, and wanting to fix it, I think it’s important for people to sit with that, now, because it’s going to make it a lot easier down the line when you do develop a disability to be able to sit with that reality and have the self-compassion that you need to survive that in this society.

What are your hopes for the future? 

Having a future where disabled people can not only survive but also thrive. Paying artists — what they’re worth and what they’re owed — is the easiest way to do that. A big reason why I work as an artist is because I need to set my own hours.

I know that the things that I’m making and what I’m offering to my community are important and they’re valuable. 

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