I’m an illustrator with some severe chronic neurological conditions. I'm stuck in a hospital bed for epilepsy monitoring this week so I thought it would be a good time to write about some issues unique to my experience as an artist with disabilities. I get asked a lot of questions, as well as a lot of indirect questions that people seem afraid to outright ask, so here’s my attempt to answer them and give some insight into what it’s like to be an artist with a disability.
First off, what’s up with your health?
This is a complicated question. I was born with something called an Arnold Chiari Malformation. Basically the lower back part of my brain called the cerebellum doesn’t fit in the skull and gets squished into the spinal canal. The pressure from the brain being pushed down causes damage to the spinal cord, and the result is headaches, nausea, dizziness, loss of nerve function, and in severe cases, paralysis. Fortunately I had surgery to halt it before it got to the paralysis part. Unfortunately I pretty immediately developed a condition called hydrocephalus, which is an excess collection of fluid on the brain that causes swelling of the surrounding tissues and optic nerves. This caused debilitating headaches, vision, hearing, cognitive, and motor control problems. Long story short, 5 more neurosurgeries ensued until I was at a stable place. Not good mind you, just stable. Throw a subarachnoid brain hemorrhage in there and sprinkle it with a hefty dose of unexplained symptoms and you’ve got a recipe for a very broken brain.
So you’re better now?
Not by a long shot. I still suffer from symptoms on a daily basis and am severely limited in my physical abilities and independence. A large percentage of my time revolves around medical appointments, battling with insurance, and going to the pharmacy. It’s like a part time job. Being “better” is a relative term to how bad things were at one time.
But you don’t look sick…
There are many conditions that cause people problems that don’t show outward signs. These are called invisible illnesses, but they can cause just as much pain or disruption as visible illnesses. It’s also important to note that different people express themselves differently. Much like a cat, I personally default to the “hide my pain and go die quietly in the corner” method. You do what you’ve got to do to deal with it and make it through your day and function in society the best you can.
Well you look good!
How did you manage to get through 4 years of Art College in this condition?
I had a letter through the student disability services department that granted me certain accommodations such as extra absences and turning in work late. I gladly offered up a synopsis of my health to my instructors but they often seemed fearful to know too much even though they weren’t asking. There are a lot of laws and regulations protecting the privacy of people with disabilities and all I was required to do was present this letter to each teacher at the beginning of the term and that was that. Nobody wanted to risk violating these laws so I believe they were very cautious in that regard. Of course I had to keep my instructors updated if I wouldn’t be in class or needed an extension, but anything medically specific was only required to remain between my physician, the disability coordinator, and me. It also helped that I took all of my general education classes (about 40% of my degree) online. I still worked very hard and pulled all-nighters and all the usual college stuff, I just did it on a more flexible schedule when I was suffering less.
How are you able to make artwork if you're in so much pain?
Making art is actually the best medicine I have found. It serves as a distraction that I can pour my attention into rather than focusing on my poor health. It’s a meditation in a way where I can block out the sensation of pain so long as I bombard myself with creating. Of course, this doesn’t always work. Certain things are easy – pencil, pen, markers. Certain things are not – clay, oil paints. I took a sculpture class that was an epic failure since I had to stand for several hours and be very physically involved. Oftentimes conceptualizing (ie. the “hmm, what should I draw” part) is the part I struggle with when I don’t feel well, and the actual details come very easily. Sometimes things are just too bad and I can’t manage to do anything but zone out or watch television, but compared with taking drugs or any other number of treatments that have failed me so often, distraction is key.
You seem to harp on your disability a lot. Why let it define you?
Well, to be quite frank, when something is such a big part of your life I don’t see how it can’t define you at least in part. I spend so much time preventing and managing health problems, and have spent the better part of my life doing so, so yeah, it’s a big part of my life. That’s not to say it’s the only thing that defines me. I’m also an avid animal lover who has spent several years working in veterinary medicine and would much rather spend my time and energy helping animals than people. I’m fascinated by anatomy and enjoy volunteering in a lab where I dissect animals. (Animals that died natural deaths or were humanely euthanized due to age and illness of course.) I was born and raised in Canada, enjoy occult horror themes, 90’s punk-rock, ethical taxidermy, and exploring in nature. So does being sick define me? Yes, but its just a part of the picture.
But why does it matter? Why do you feel the need to talk about it?
Personally I believe knowledge is power and it’s good to know these things. When I talk about my conditions I hope that people learn a little something about neuroanatomy and that these things exist. Honestly it’s just sort of fascinating and I often encounter people who want to learn more about the operations of these silly mounds of meat inside our skulls. Hopefully it also informs them about invisible illnesses and the impact they have as well as the social challenges and stigmas they carry. Additionally I hope to influence the inclusion of people with chronic illnesses and disabilities in the arts and society in general.
How have your problems influenced your interest in art?
Originally I intended to pursue a career in veterinary medicine and even went to school for that. At a certain point during all of the hydrocephalus-related brain surgeries I decided this wasn’t working out because I couldn’t be reliable to show up to a 9-5 job, was in too much pain to focus on what I was doing, and found that the physical stress of lifting, bending, and standing all day exacerbated my symptoms. I made the difficult decision to abandon the field and while feeling lost, realized that my hobby of making art was something I could still do. I tried going it alone and becoming an artist but realized I had no idea how to do it. Once I was in a more stable place I enrolled in a four-year art program to get the training and connections to attempt being a career artist for realsies. During more stable periods I’ve tried to return to the 9-5 grind and even veterinary work since I truly miss it, but again it was only a matter of time before it became unmanageable.
What sort of things do you struggle with while making art?
The biggest thing is probably cognitive difficulties. I struggle with my memory sometimes since I have a little bit of brain damage but it weirdly only really affects my ability to recall names. This doesn’t directly affect my ability to make art, but can make interactions with clients a bit awkward. Everyone gets brain fog now and then but I have it an awful lot. It’s often really difficult to brainstorm how to create and compose something and this is the part of the art process that takes me the longest. Something that really surprises people is that I have something called aphantasia which is the inability to visualize images in my mind. This isn’t really a medical condition so much as just a phenomenon, but it definitely affects me as an artist and is probably a topic for a whole other blog post.
Do you have any advice for artists who are struggling with a disability?
I have several bits of advice!
1. Know your limits. Figure out what works for you and what you’re capable of. Perhaps you just need to modify certain materials, positions, or styles to make something work. Don’t overdo it and put your health at risk. Many people with chronic illness subscribe to the “spoon theory”. I personally feel like it’s a convoluted analogy, but the point is to achieve a sense of balance with what you want to accomplish and whatever energy reserves and pain thresholds you personally have.
2. Own it. At my art college the director of student affairs once said something to the effect of “don’t let your disability control you, make it work for you.” He was referring to getting help through disability services for that accommodations letter. I thought this was a really powerful sentiment and it stuck with me to this day. (Thanks Yves!) In that vein, I would say to make yourself aware of all the options and services available to you and don’t be afraid to accept help. There are even scholarships and grants for disabled students and artists and exhibitions that specifically focus on showcasing the work of disabled artists.
3. Don’t give up on your art. Keep at it, practice, and put yourself out there.
4. Don’t give up on your health. Even if there’s no getting better, focus on feeling as good as you can.
5. Just don’t give up.