One of my life challenges is navigating a world where the majority of people I encounter feel only sorrow for my son, Julius. I prefer those who feel nothing over sorrow, because nothing is easier to walk away from. Nothing can't stick. Sorrow knows how to linger and accumulate and it is annoyingly sticky.
Value, though, has the power to transform sorrow. Value is linked with purpose and integrity. But value is very difficult to demonstrate through the body of a life so severely impaired and fragile, in a world where comparativeness is part of human wiring.
"What does he cost us (society)?" someone once asked theoretically and economically speaking. "He should be dead!!" a person screamed repeatedly in the park one day while pointing at my son. "He's not a candidate for a speech device," the school pathologist reported. "We cannot support your request for a power wheelchair unless he can demonstrate that he can use one" said his physical therapist under the state program for children with disabilities. "But, how can he develop the ability to use a power chair if he doesn't have one to use?" I pushed.
Years ago, when I visited the Holocaust Memorial Museum in D.C I learned that the first people killed under Hitler were not executed for being Jewish. They were people with disabilities seen as having no value and no purpose, a burdensome economic expense. With sorrow being non-existent, this made for a grossly abusive combination of judgements embraced by those in power.
It's been hard to keep nurses on the clock who prefer easier cases for the same pay once they see the magnitude of Julius' dependency and the workload for his care, especially now that he has the body of a young man, rather than a child. But the ritual of his physical necessities in my hands, has become a natural pattern that is layered and can be complicated, but is not difficult once in motion.
My son and I have the most intimate conversations-even when they aren't spoken. During focused moments when I am caring for him and his body, the rest of the world falls away. It is very similar to when I am making art. So I realized, this caretaking is also my art, this process, and that is how the two roles merged for me in my life and work where value is inherent just because it is, whether or not it is noticeable to others, whether or not my ability and my value are underestimated, like his.
I use the word "caretaking" instead of "caregiving" which is more common in this arena (and may be more differentiating from a social perspective.) "Caretaking" fits me better because I take away something of value that is given up by the person being cared for, my son. While "caregiving," feels one-sided: to give care (and possibly myself or parts of myself) away as in a martyrdom.
I can't always find the words to describe Julius' value, even on days when I feel that I am fighting everything or everyone for him, for us (or especially on these days.) But tonight, unexpectedly, his little sister described her brother's value perfectly:
In our self-imposed home quarantine, my four-year-old was playing on the living room rug. I was giving Julius his tube feeding while we were getting the Coronavirus update. My daughter was lost in a world of princesses. And then without any relevance that I could find, she said, "Mom, Julius knows how to make me happy when I am sad or mad." "Yes," I said, "he does know how to do that. He knows how to make me happy when I am sad or angry, too."
Be safe everyone, if not for yourself, for those more fragile, but just as valuable.
Jules is home earlier than expected and we were later on the road than planned. We arrived just before 1:00a and I was unloading the van of all his equipment with the front door wide opened when SWEET GARY showed up!!! "Ali!" he yelped. "What are you doing here?" I said in surprise. "Aren't you going to church in the morning?" "Yes, but I thought you'd be hungry and I made some chicken soup." What did I do to deserve this friendship? Gary asks nothing in return. While I tended to Jules, he took Lilac out for potty. By 3:00am all was settled. Gary had gone home with my girl-party-dairy free-caramel-popcorn-balls from the previous night, to share at the church hospitality table and I was tucking myself into bed.
Then some time in the early morning in the middle of a dream I heard a repeating sound, "Amy?.... Amy?.... Amy?..." I woke enough to know the sun was up. "Amy?... Amy?.... Amy?" I rolled over and thought the sound stopped. I decided it was part of my dream. Then it continued. It sounded like the voice of a young child searching for someone, but my daughter wasn't home. Maybe the girl next door was playing in the back yard. Maybe she was looking for a stuffy or baby-doll. But why would she be out there so early? And she's older now. Would she still have baby-dolls? What time is it? "Amy?...Amy?.... Amy?...." Then, I realized, it wasn't coming from outside the window over my bed. The sound was inside the house. It was steady and persistent. "Did my daughter come home while I was sleeping? Is she dreaming? (She talks in her sleep.) No. She wasn't here. And it was so patterned, like breathing. I realized it was resonating through the speaker on the monitor from Julius' room.
Was Julius calling me? Julius is non-verbal. There is one word he used to say before he got is trach a few years ago. It was "Em", his word for MOM and I haven't heard it in a long time. This was different tho. I was finally fully awake. The house was cool so I slipped into my robe. I went down the hall towards his room. The sound was louder as I approached his door. "Amy?.... Amy?.... Amy?..." I opened the door and naturally checked his sats. 98% oxygen saturation. Good.
He was asleep. The sound was coming from his opened mouth or his trach or both. I was still too sleepy to decipher. I adjusted his head. I moisturized his trach with saline drops and suctioned him with a catheter. The sound stopped and I was a little sad. Lilac shuffled and I went back to bed.
Braided string, suction catheters, metal, enamel paint
This is no more a yellow sweater than a fertilized egg is life.
Then again, it does have the potential to be a yellow sweater. It’s made up with chain stitches. There are pompoms and a repeating pattern. It does resemble the shape of a sweater after-all. Sort of. Doesn’t it? And if you can see color, you can certainly see that it is, in fact, yellow! On the other hand, if you are color blind, whether or not it’s yellow may not matter to you so you can just believe me that it is a yellow sweater. Why would I lie?
Repetition is persuasive. It strengthens neuropathways.
If I say to you “This is a yellow sweater,” and repeat it over and over again, chances are you will come to believe it is a yellow sweater.
To be controlled in this way is to be under the influence of the illusory truth effect. We’ve all been manipulated by it. We stop thinking for ourselves, don’t bother researching facts and limit our possibilities that could expand our knowledge.
This is a yellow sweater.
I just finished two small landscape paintings that I started in 2012. Crazy, huh. But that's how it goes. Sometimes, pieces take years to resolve. They are called Fringe and Rake.
The genre of landscape painting is a foundation in the history of painting and a recurring theme in art that is studied countless ways. Our evolution of language has expanded this word “landscape” beyond its signifying noun for an outdoor, botanical environment, natural or human made.
“Landscape” has become an umbrella-term to mean any scope of space, tangible, immaterial, hypothetical, macro or microscopic. This includes internal landscapes of thoughts, emotions and dreams; scientific landscapes of research; religious landscapes of theology and practice; landscapes of business relations; political landscapes and territorial landscapes; social, cultural and ethnic landscapes and so on. We could even discuss landscapes of ethical nature.
Metaphor is also extrapolated from the landscape to convey ideas that have nothing to do with any physical span of land. Like, the phrase “low hanging fruit” which was used a lot in 2000 when stem cell research was forging forward at remarkable speeds with cures for neurological impairments within reach. Today, due to dogma that stalled this research, we are more likely to hear that such potential breakthroughs are “on the horizon” meaning somewhere in the distant future. In traditional landscape painting, the horizon is in the background, a placement of design typically structured with less importance or as a “back-story.”
In these oil painted landscaped, I have pierced the foreground to place the medical tubes I use to nourish my son “un-naturally.” I attached their tips through the punctures/stomas I made. And this brings your attention to the foremost front of the work. When I am in a state of process, however, I am more intuitive. Conscious thinking is not typically in the forefront of my awareness when I am producing art. Unless, I am struggling with something, thoughts dissipate.
Inserting these tubes into my canvasses was not so different from how the tubes are attached to a body being cared-for. During training, there is more conscious thinking, but eventually, skills become intuitive. Intuition comes from learning. These moments of care-taking and art-making are so similar that it’s blatantly clear to me that they are different appendages of the same thing.
The attention these tubes bring to an, otherwise banal landscape painting, are the focal point of these landscapes, an intentional purpose. I do not like when aides pull my son from social situations to feed him as if this is something best hidden. My deliberate arrangement of these tubes interrupts previous precepts. The result is a new kind of landscape.
When the opportunity presents itself, I want to further explore this concept with a much wider, vast horizontal illusion, in mural size with hundreds of feeding tubes.
We’ll celebrate feeding tube awareness, nutritional health and have an inclusive lunch!
(Imagine smiley-face emoji here.)
#feedingtubeawareness #nutritionalhealth #foodie #contemporarylandscapepainting
I am getting ready for a show (and talk) at USC Keck School of Medicine Hoyt Gallery. The title is Chain Reaction. In addition to a statement, Ted Meyer has asked me to write descriptions for the work that can accompany the pieces. I know this task can either enhance or end someone's experience with the work so my intention is to provide additional information that won't discard other perceptions. Fingers crossed. The description I wrote for Hexaptyph has much to do with all the work in the collection so I chose to share it here on my blog.
TITLE: Hexaptyph “When everything you thought you knew no longer functions the way you thought it did"
MEDIA: Oil on canvas, acrylic on Model Magic, stainless steel, wood, extruded acrylic rod.
A hexaptych (or polyptych) is a multi-panel, altarpiece, common during the Early Renaissance. These images were used to tell stories. My contemporary hexaptych (made of six panels) depicts the burning of chairs juxtaposed with models of brains.
Chairs embody characteristics of people, specifically their bodies (backs, legs, arms, seats). So to burn a chair is to kill a body, or in this case, the idea of a body.
Our brain-body relationships depend upon the firing of neurons that are charged secondary to sensory stimuli. We form our stories from this stimuli. You are doing this right now. And you are using your physical awareness to do so.
Despite outward appearances on the body, the basil ganglia, located within the midbrain, is the rooted location of the injury within my son's brain. This midbrain gateway from brain to body for motor control is the basis for his form of Cerebral Palsy. Here, neuronal barriers make it difficult to sense ones own body in space. Balance and equilibrium are impacted because muscle neurons fire uncontrollably. And knowledge, which is normally gained through movement or the memory of movement in relation to the world, is less obtainable.
A group of nuclei in the midbrain make up the basil ganglia. With deprivation of life-dependent oxygen, there happens a chemical change as the brain transcends in an attempt to save itself. This causes calcium deposits to form. An ethereal and symmetrical pooling of these deposits appear on an MRI as a white moth-like shape. It signifies death of brain tissue. Scars left behind are peppered throughout the circulatory system of the brain. Their knotty fabric blocks neuropathways hindering the flow of information. Extensive damage impairs the four quadrants of the body: right and left arm, right and left leg, and the body’s center: its trunk, neck, vocal cords, tongue and swallow. Additionally, all areas of sensory input can be involved including sight, hearing and the nerve endings for receiving touch and feeling pain. Physiological change is the result of a global chain reaction.
Clearly, I am not illustrating this medical phenomenon in my hexaptypch. I am, however, meditating on the brain-body connection as I now understand it, through making tight renderings of which my brain and body are capable. I’ve strung together a narrative having to do with my relationship with my son using sensory stimuli and muscle memory that blend and separate the two of us (My brain-his body. His body-my body and so forth.) It is a conflated combination that continues to color my view of the world and give me agency.
One Step Removed is an Installation of meticulously painted, manipulated and constructed objects. The anchor for the show is a sculpture that gives the Installation its name. It is constructed from two doors: An exterior glass-paned door that I removed from my art studio and an interior, flat-faced door that I took from inside my house. The two doors intersect and this intersection provides the balance necessary for both to stand or “float” cantilevered in space so that the much lighter, hollow paneled door supports the, heavy, solid fir wood door. We could talk in detail about doors as metaphorical and literal protections over privacy, boundaries for our spaces and caps for passages or portals and that would be applicable. But consider, the doors as markers for human figures- one seemingly weaker upholds the stronger figure, which in turn, keeps the lightweight door from falling.
If I had to explain my work in two words, the first would be dependency. My two interlocking doors/figures demonstrate this quite literally.
The second word would be design. Design dominates in my deliberate arrangements of elements be they conscious or intuitive. Design is also the scaffold underlying all dependency.
I wanted to work with the bandanas for several years. Although, these common manufactured cloths are iconic for American Western Culture, international fashion and corporate industry, in my life, they are an intimate part of my ritual of caretaking. These bandanas have been used as part of the dressing that protects my son’s tracheostomy. They also provide a barrier for those who come close enough to him and find themselves in the line of fire, should he cough into their faces. In this instance the bandana is a filter.
I took that filter and, like the doors, removed it from its purpose, and gave it the opportunity to have another.
Folding these used bandanas into lotus shapes reminded me of the folded paper games I played as a girl- the ones that were supposed to tell us our futures- would we get married, how many children would we have, whether or not we’d be rich and so forth. People who came to the installation commented on how they were reminded of this same childhood activity.
The painted doors and their patterned hardware are not much different from the bandanas and their endless possibilities of patterns. For starters, both are common. Both are utilitarian. And, both have been paired by the less common materials I have taken from medical supplies necessary to sustain life.
I took some of the bandana patterns and translated them into small mixed media paintings and collectibles that toy with objects of domesticity and popular culture that are directly imbued with the plastics and rubbers of our medical supplies: a catheter, IV syringe, suction tip, aspirator tubing…. For me, the work is demonstrative of the details that go into quality caregiving that isn’t sloppy or haphazard.
Making this work separates me from the part of myself driven by thought. It offers silence as I detail the surfaces, crease the folds and combine things that seem unrelated. By mixing these used objects of medical necessity with paint and narrative I hope to give them alternative and less expected ways to be seen and experienced, much like my family and me.
One Step Removed was shown at Flux Art Space in Long Beach, CA. This installation is available for travel and expansion.
Artists have been using readily available materials for as long as there have been artists. Someone asked me if I bought the syringes I used to make Check Residuals. The answer is, no. While they are not what typically comes to mind, when talking about materials that are readily available, they are my readily available materials, used daily to tube feed my son. I have cleaned, stored and collected them for many years. I've always found them of value- not just for their originally intended function, but for their materiality. When I sold my house and moved, I tossed several of the saved stash away and was, later, sorry for that.
I'm not trying to change the identity of these medical objects by turning them into art. First of all, I already see them as art. What I want, is for you to identify with them, even if you have never had to experience them intimately, the way I do.
I want you to see them for what they are. But, I want you to see them in another light... for what they are....a light that is less alienating, less frightening and more embracing. After-all, therapeutic science, medicine and technology, in good hands, has the power to heal. That's pretty amazing. And in many ways, art can have a parallel effect.
Ultimately, the years of ritual and accumulation to make Check Residuals, followed with months of work; Then many hours to install. And the piece was documented in a video that is less than five minutes in duration. I hope it is a moving five minutes.
Whether or not a piece of work is successful is not something, I think, an artist can know during the process of creating that thing. It may take a long time to know that answer. I had a lot of dialogue with people who passed through the installation. More responses were emotional than I ever expected. But it wasn't until someone said 'they' wanted to meet my son that I felt a a significant level of success.
A video of Check Residuals can be seen on my website: AliceMariePerreault.com and on Youtube.
Demisexual- Finally, a word that describes my sexual orientation. The reason I stopped dating is because none of my dates believed me when I said it was important to form a non-sexual friendship before I could consider anything else.
"A demisexual is a person who does not experience sexual attraction unless they form an emotional connection. It's more commonly seen in, but by no means confined, to romantic relationships."
Yup, this is real. Of course, it can be more complicated, like when ya think there is an emotional connection but later discover it was one sided. Ouch! ..... None-the-less, I'm sure I have friends out there who feel the same way (You know who you are!) Maybe you also didn't know there is a name for this orientation. Maybe, with a word to describe us, we can be taken seriously when we say "put in the time." Someone truly interested will do that. Others won't and that's fine with me 'cuz I have kids to love and art to make.
Someone, disappointed, once asked me, "Did you just put me in the friend-zone?" not realizing THAT was a GOOD thing! Face it- the older we get the harder it is to develop in-depth friendships. Still, I believe, through our hardships and in the end of life, it's the strong foundations of friendships that hold people together. After-all, it's much easier to love somebody and not like them than it is to really like somebody you love.
Dome Vision: The ability to see the past objectively, the present relatively and the future potentially.
Check Residuals: The practice of evaluating what is present before making any decisions, actions or movement forward. Commonly used in daily caretaking for oneself or another who receives nutrition via a gastric tube. Consider: gut feelings.
I'm pretty excited about "Check Residuals," an art installation I have been developing for several weeks. I see all these pieces (like fragments) as I work methodically, never clear about where the process will lead, despite the appearance of order that happens. And I'm left on edge as the days pass while I move further from my starting point. It isn't until the parts begin to arrange themselves through newly formed relationships that could not have happened without going through this process, that I can begin to feel some measure of satisfaction.