Below, we interview Rosary Solimanto, 37, a New York born artist diagnosed with multiple sclerosis, who fiercely challenges and questions the medical community and society at large when it comes to the portrayal and stigmatization of the disabled.
“Historically the social injustice of disability identity was constructed from eugenics programs and institutionalized biomedical infrastructure. Art on this subject is overdue, and would empower people with disabilities through a visual language and social platform, calling out prejudicial misconceptions,” Rosary starts off her interview with no hold-backs. “Objectification and perfectibility of the human body will continue to prevail, until art explores the oppressive stigmatizations associated with disability identity. I source my material from exposing the conflicts I face with multiple sclerosis. My art transforms space allowing the audience to become voyeurs entering my private medical world to expose the heightened oppressive realities and truths.”
Where are you originally from?
Lake George, NY (in the Adirondack Mountains)
Where do you currently live?
West New York, NJ
Preferred Art Medium
I work in the medium which best suits the concept I am creating. I enjoy blacksmithing and welding above all others.
Who are some of your favorite artists?
Shigeyuki Kihara, Dread Scott, and Alfredo Jaar
A Room of One’s Own, by Virginia Woolf
Don’t have one. I’m currently listening to: ALU
What is something you deeply love about yourself?
My strength and determination.
What would you say are your artwork’s main themes?
Disability identity, pride, and awareness
How would you describe your style?
Historical and contemporary— all work is concept-based. I examine the historical aspects of the subject (which I am creating) as well as contemporary trends. This blends into the work I create.
“Objectification and perfectibility of the human body will continue to prevail until art explores the oppressive stigmatizations associated with disability identity”
Methotrexate, 2015, digital photographs, 8”x10” (part of series)
Can you remember a specific experience from your life that has shaped who you are and what you do as an artist today?
Yes, the stem cell transplant I underwent. Not only was this a physical transformation, but a mental one, as well. I became stronger, confident, resilient and learned to adapt to whatever situation I was in. I developed disability pride and learned to love all of me. I realized I was always going to have health challenges and I had to learn how to live with them and do things differently and accommodate my body.
Your artwork is directly related to your diagnosis of multiple sclerosis and the experiences you’ve gone through as a patient and a woman with a disability. Can you recall for us what your path has been like?
Not easy, putting it mildly. Most people (including some friends and family) are quick to judge because I am disabled. There are stereotypes that surround people with disabilities which are (but not limited to): lazy, helpless, needy, weak, don’t want to work, have a lot of free time, have things handed to them, and aren’t choosing the right treatment options for their health condition. My life has been anything but these reductive stereotypes. My days are filled with trying to manage my diseases and health conditions. I go to the gym daily, see doctors, pharmacies, labs for blood work, health food stores and vitamin stores frequently. I have chosen to admit to having a disability and because of this I am a liability to employers. Many employers share this stereotypical mindset I mentioned above. The little bit of money I have, I spend on my health, and I work more hours or take on extra jobs to make the money I need to create. I’ve learned to create with little financial resources. In addition, I have numerous works which need to be created to aid intersectional people with disabilities.
In what way did your medical condition inspire you to create artwork?
When my body and mind were crippling me, I could barely move. I stayed on the couch, in my bed, or in the hospital. I became quite depressed from my limited movement and I longed to be the person I was before my disability. It wasn’t until I learned to love all of me (including my health conditions) did I begin to live again.
“I have chosen to admit to having a disability and because of this I am a liability to employers”
What is the intention behind your artwork?
Each work has a specific intention, but in general I want people with health conditions to feel empowered and to wear their identity boldly, and not feel it’s something which characterizes them as weak.
Tell us a little bit about your pieces “Trigeminal Neuralgia” and “Weight”
The piece Trigeminal Neuralgia is a wearable steel sculpture named after the set of three nerves which branch off the trigeminal nerve, located within the jaw, cheekbone, nose and forehead. These nerves can be affected by lesions on the brain or a spinal cord injury. This condition is known as the most painful condition to humankind. I experienced trigeminal neuralgia for almost 2 years, but after the second brain surgery I underwent I managed to resolve the pain into something I can live with and manage.
The wearable steel boots called Weight, was created to portray legs as heavy weights, simulating the difficulty and pain to walk or move when experiencing invisible health condition(s). I used one-inch thick steel at the base, causing the boots to weigh over 24 pounds. They are inspired by orthopedic braces for feet, work boots, and Frankenstein’s boots. The forged steel boots are lined with brown suede to depict the lower socioeconomic status one may face being on disability based income from health condition(s). I have performed in these boots (at Nut Blanche Festival in Toronto, CA), the loud sound and appearance open a dialogue between myself and the audience members. They ask me about them and I divulge my invisible health condition, and they, in turn, tell me theirs.
“The wearable steel boots called Weight were created to portray legs as heavy weights, simulating the difficulty and pain to walk or move when experiencing invisible health condition(s)”
Weight (view 2 with performance), 2015, wearable sculpture coupled with performance, steel, suede.
You have a very explicit video piece about the grotesque daily rituals of self catheterization. Tell us about the piece and why you think it is relevant/important to portray this in video form?
The video allows the intimate nature of catheterization to be exposed. I catheterized myself for many years to prevent UTI’s. I was humiliated that I was in my 20’s with bladder issues. My family, friends, 2 kids, and partners never knew I did this. This work of art empowers those like myself because they may feel humiliated for catheterizing themselves. The piece allows for conversations to unfold.
Have you had any struggle with mental illness (and/or addiction) and if so, how it has played into your artwork?
I believe the physical body cannot be separated from the mind, meaning those with physical conditions will also have mental health issues. Those with mental health issues will have physical health issues. For example, the obstacles, stigmatizations and oppression people face with physical condition will give them mental health issues. Those with mental health issues may experience physical conditions such as fatigue, difficulty with moving, tremors, etc. So yes, I have definitely experienced depression, especially when I was initially diagnosed. I was embarrassed I was sick, humiliated and degraded by medical treatments I received or used, and embarrassed from walking aids. I did not accept my new body for many years. I grieved over the loss of my old body and was depressed.
You challenge the medical community in terms of how they treat people as “only a diagnosis”. What would you propose to change this?
For doctors be mandated to do a course in school (including clinical work) where they learn how not to talk down to the patient. How to explain things so the patient may understand. To not frighten them into treatment. To provide all of the information about their diagnosis as well as all of their treatment options. Also providing treatment options that are natural or “Eastern” options as well. Insurance only covers what the American Medical Association sees as treatment options. However, people have been treated for thousands of years naturally. I have noticed in the past few years the historical methods of medicine being used, but on a minuscule scale.
“I intend to bring awareness to the public of the political hold on the disabled community”
What are the main obstacles you have had to overcome as an artist?
I have to work a day job to pay bills, but my daily cost of living is much higher due to medical bills, prescriptions, vitamins, healthy foods, gym membership, etc. I have to do all of these things daily to keep my body functioning and I struggle just to do this. Then I have to work a job, and some how manage to find energy, strength, and money to make art. In addition, I experience quite a bit of physical pain daily. I have chosen to no longer take medication to aid with the pain because I have found it affects my intellect. In addition, I cannot weld or operate heavy machinery like I do with pain medications. The pain I experience, and the amount of things I do daily exhausts me most days and I push myself everyday to do what I need to do. Eventually I find myself in bed barely able to move from pushing so hard.
What kind of patterns, routines or rituals do you have to keep the creative juices flowing?
I don’t have to do anything. I have notebooks full of ideas. I wish I had the time, and resources to complete them.
“My issue is that all of the language used to describe people with disabilities carries a negative connotation. The etymology of each of the words implies negativity historically and currently”
The Patient, 2016, digital photograph, 24”x16” (part of series)
What project/series are you currently working on?
I just finished writing, directing, producing, acting, and creating the audio, to the piece The Patient, which I recently performed for the first time at Dixon Place In New York, NY, for The International Human Rights Art Festival.
I am also creating a series on hand palsy. I am still working on the first of the series which is a wearable kinetic piece, which part of it is forged.
I have also been in the process of finally creating a book, which will have artistic, medical, health (food and exercise) elements, as well as memoirs. Later this week I am performing for the Nasty Women’s Art Exhibition in New Haven, CT with the work Alive.
I am working with 3 medical students to create a public piece "700 Medical Coats". This will be displayed in New York City sometime in the last week of July. This work will explore the 700+ volunteer medical professionals that have lost their lives in Syria.
And last but not least, I am embarking on a new project directed at the political issues the disabled/elderly community faces with Medicare becoming capped. I fear for the lives of the disabled and losing the little bit of medical care we now have. There will be a video, photos, and performance elements to this public work. I know the piece will be controversial, but I intend for it to bring an awareness of the political hold on the disabled community to the public.
Finally, what do you think about the term disabled? Do you prefer the term "differently-abled"?
This is a difficult and most complicated question to answer. I have given this question about the words used to describe people with disABILITIES much time and thought. My issue is that all of the language used to describe people with disabilities carries a negative connotation. The etymology of each of the words implies negativity historically and currently. For example, if one says differently-abled this can make someone feel or imply they are an outsider or a freak. Does anyone want to be thought of as different? Disabled implies one cannot do something, or something is missing. The word handicap brings to mind the blue sign with the stick figure sitting in a wheelchair. I hold the medical community responsible as they continue to use this terminology when labeling people.
I believe the language used needs to change in order for the disABLED community to be seen positively. For example, I prefer the word I created to describe the disABLED community, "Handy". It means a skilled individual; I believe those with a disABILITY have to learn specific skills to accommodate their health condition(s). In addition, the word "handy" is a happier word and has no negative references or etymology. The images which come to mind when someone says "handy" is someone who can fix something or make something better. I created an art piece which I would prefer would be implemented as 80% of people with health condition(s) have an invisible condition, instead of the stick figure with the wheelchair. I have chosen to represent "handy" people with an inclusive symbol of humanity, the hand print. I used a blue hand (instead of a blue background) to represent people with health conditions because disABILITY does not discriminate and it can affect anyone regardless of race, religion, gender, and class. Handy can be made into a removable sticker and placed directly over the stick figures in a wheelchair. I consider Handy to be a work of art which will take a lifetime to implement. It's the beginning of a language I intend to create which will be positive and intersectional. I also prefer to write disabled as "disABLED."
Anything else you’d like to add?
For people who live with disabled people; please don’t apologize when finding out. Instead ask the person how they feel about it. Let them tell you. I feel awful when I tell them, “I have multiple sclerosis,” and they respond with, “I’m sorry.” Feeling sorry for me is pity, and in addition makes me feel bad for being who I am. I have MS, I am not sad about it, nor do I want pity, or for you to feel bad that I have it. I am stronger because of my health conditions and appreciate my life because of it.•
“I prefer the word Handy to describe the disABLED community. I have chosen to represent "handy" people with an inclusive symbol of humanity, the hand print [pictured below]. It's the beginning of a language I intend to create which will be positive and intersectional”
“The piece Trigeminal Neuralgia [below] is a wearable steel sculpture named after the set of three nerves which branch off the trigeminal nerve, located within the jaw, cheekbone, nose and forehead. These nerves can be affected from lesions on the brain or a spinal cord injury. This condition is known as the most painful condition to humankind. I experienced trigeminal neuralgia for almost 2 years, but after the second brain surgery I underwent I managed to resolve the pain into something I can live with and manage”
Trigeminal Neuralgia, 2015, wearable sculpture, steel, 6”x4”x11”
“I source my material from exposing the conflicts I face with multiple sclerosis. My art transforms space allowing the audience to become voyeurs entering my private medical world”
Cripple, 2016, forged steel, 5”x3”x32”
Read more about Solimanto's work on her website here
Rise of the Cyborg, 2015, kinetic sculpture, steel, iron, hospital gown, hair, acrylic glass,
56" x 40" x 72"