down syndrome awareness month

Portrait of Sophie – Studying Trisomy 21 is complete. Amy, Sophie and Annabelle come to see the drawing in person. My husband, eager to meet Sophie, is also present. We gather in the studio and enjoy pizza.

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Part of me wants to write about the conversations I have with people about this study, about Sophie, and about Down syndrome. It affects more families than I can know when I begin the work.

My hairdresser, for example, has a brother-in-law with DS.  She tells me about his mother who advocated for him. He could have been institutionalized considering the era he was born into. Instead he grows up at home alongside his brothers and sisters. Now in his sixties, he lives in an apartment that he shares with a roommate. I listen, ask questions and wonder why I didn’t know this before now.

I’m in a waiting room this week and come across a magazine dedicated to Down syndrome. Has the magazine always sat here and only now do I notice it? I read an article about research and funding that reminds me…

I know someone who writes (beautiful poetry) and she also happens to research immunology. A few years ago we had a conversation about the immune system and rheumatoid arthritis (her area of study). I contact her and ask what she might know about Trisomy 21 and the immune system. Arpita responds generously.

(A note: If you follow my work, you know I only focus on details directly related to Sophie. This post is more general education about DS, in particular it is about the immune system.)

Trisomy 21. If you say these words to a complete layperson, they will find it lyrical, enchanting, exciting and even beautiful. But then you tell them what it is, and their smile fades.

Not a lot of people know that T-21 can have immunological abnormalities associated with it. As you rightly pointed out, not much info is available regarding the immune system in DS. It’s only now that we are getting an idea of what’s going on in these patients.  The immune system develops, but poorly. There is reduced numbers of cells of the lymphoid system. Those cells that do develop respond poorly to antigens and are unable to travel to site of infection or injury to do their thing. The cells divide poorly when they are activated by an infectious agent. Some cells are supposed to secrete antibodies of a particular type when they are activated and this process is also impaired. And thymus, the organ in which T lymphocytes develop, is rather small and underdeveloped in these patients, suggesting that the immune system doesn’t really get a chance to develop from the very onset. Again, the fascinating thing is that the immune system is not completely broken; it is just not strong enough to protect the poor child. 

I thought I finished the heart and lung area but with Arpita’s words, I come back to indicate the thymus gland (bright blue circles atop the heart – the lymphatic system strings throughout the body). I understand from a previous study, the typical thymus is larger when one is young and becomes smaller as one ages.

A body worker once told me it crystallizes suggesting the change a positive.

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Arpita continues…
There are other indirect causes postulated for the immunological abnormalities. These patients have poorly developed or malfunctioning digestive system, which makes it hard for them to assimilate nutrients. This could lead to deficiencies causing immune perturbations. Also, children with DS most commonly experience lung and heart infections, and many groups claim that this is because the architecture of the respiratory system is abnormal and the natural barriers which filter out infectious agents are less effective in such a setting.

What I find fascinating about DS is that despite the presence of a purportedly underdeveloped immune system, these patients are susceptible to autoimmune disorders. It actually makes me mad, you know…why would an already weak immune cell waste its resources in fighting its own body, when it should be fighting invading pathogens? Sadly no one knows why it happens. My guess is that it has something to do with the abnormal architecture of the organs where the immune cells develop early on. Events in thymus and bone marrow shape the repertoire of immune cells ensuring the survival of cells which are not only most potent, but also which will almost certainly not react against the body. If these organs have developed poorly or are missing certain vital components, this will undoubtedly affect the development of the immune system.

Are you familiar with the process by which immune cells move within the blood, within organs and across tissues? It is fascinating and beautiful documented through images and time-lapse imaging. It is an intricate dance of communication between molecules. There are bits and pieces of information that this movement and migration ability of immune cells is impaired in T-21. Again, no one knows why this happens, but lack of proper direction and mobility can significantly impair immune responses.

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Portrait of Sophie – Studying Trisomy 21, Mixed media on Paper, 80″ x  45″

So…I ask questions, research, and present what I come across and never know what’s to come next. Arpita and I end our conversation but not until she expresses something I take for my self.

…there is so much that we don’t understand about the human body, in particular how different parts communicate and intertwine with each other functionally. I think part of the reason is that because as young students we are encouraged to accept dogmas and hold on to them rigidly.

However, someone like you, an intelligent person with no dogmatic notions of the medical field, can look at the existing information with fresh, unbiased eyes, and hopefully help the rest of us to see important clues that we have missed. …good luck with your drawings.

I can hope. October is Down Syndrome Awareness Month.

The web of life…today I understand better everyone brings something to the table.


I want to take a minute to thank everyone who helped with the research for this work. In particular those of you that helped me gather and understand the information so I could work with it and write about it. Thank you Amber, David, Dominique, Arpita, Elisa, and Amy. And thank you Sophie, for the spirit you bring to the picture.

For information about Amy Silverman’s book visit the website→ My Heart Can’t Even Believe It

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Big sister Annabelle taking a long close look at the portrait.

freedom in what is

I have a rocking chair in the studio. I sit and look at the days work. Last night I feel good about my current study. I enhance, highlight and pull the form together. Now the rest of the story can get organized into a grounded picture plane.

I draw 13-year-old Sophie, who has Down Syndrome or Trisomy 21. I research carefully to be accurate on details. It’s challenging because I think I understand but I don’t know that I really do. I also know at some point the science has to get set aside so I can paint with freedom.

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I find it interesting that Sophie hangs on the wall with studies of my mother and father. They both retired from the El Paso Public School District – my father was a Special Education counselor for the west area of the city and my mother was a Speech and Hearing therapist.

Mom spent over 32 years working in education. She worked in Special Ed with both the moderate to severe disabled as well as with regular education that included speech problems, hard of hearing, and articulation deficiencies.

I call her while I work and ask if she is a very patient person. I use the word very but what I really mean is more than I can know, cause frankly Mom’s not known for her patience. And she doesn’t pretend to be … patient.

How did you do it, working in special education for all those years (I also want to ask how she raised 6 children)? She pauses for a good long time and then tells me she’s a realist. I just deal with what is Monica. I don’t make more of it or less of it. People are who they are. I could do it and I did it well. Not everyone can.

Mom takes care of dad these days. And I admire what appears to be her patience.  I admire her practical nature and her ability to deal with what is.


On another note…
As I sit in the rocker I decide I love the freedom this open armed posture holds. It’s not my idea for Sophie to take this stand, it’s hers. I remember when we were starting out her mom saying something like … yes, that’s Sophie.

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I recall a small, playful print from a few years back and I have to say, it feels more than natural to be pulling this composition together now.

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a colored body

Chromosome – from the Greek, chroma is color and soma is body. A colored body!! I’ve wanted to draw a chromosome for some time. This one is my first, it won’t be my last.

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Chromosome

Chromosomes are tiny, thread like structures located inside cells (in the nucleus) made from DNA, RNA and protein. The stuff inside your chromosomes (that DNA) instruct a cell in how to function and replicate. Every form of life has its own unique set of instructions. Your chromosomes determined your eye color, your height and whether you are a male or female. Humans have 23 pairs of chromosomes for a total of 46. Twenty-three come from mom, twenty-three come from dad. Oh – and a horse has 64 while a fruit fly has about 8. Plants have chromosomes too.

I understand some chromosomes are longer than others because they contain more DNA, Humans have about 30,000 genes in their 46 chromosomes.

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Telomere

See the yellow area at the end of each arm of the chromosome ↑, that’s a telomere. Telos is Greek for end,  and meros means part. They sort of keep the form from unravelling (like the plastic tip at the end of a shoelace). As we age, our telomeres become shorter. Naturally I wonder if we can grow our telomeres. One thing leads to another and before you know it I arrive at stem cells. And while I thought I understood what a stem cell was, I really didn’t. I won’t get into it now, but that stem cell research thing…incredible!
(go here for more → Doris Taylor – Stem Cells, Untold Stories)

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Stem cells

Ok, I need to stay focused but suffice it to say the beginnings of life are awesome. I don’t use that word lightly . One thing leads to another, and then another, and here You are and here I am.

I can’t help but believe if we could slow down and peek into the wonders of life each and every day (Could you? Would you? In any form you wish.) would this be a different world? It feels crazy out there but know, at your core, you are amazing!

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i get questions

I appreciate getting emails from people who see my anatomy studies. Now and again I enjoy answering a question. Here is one I receive today. Thanks Karen!

Just want to share how much I enjoy seeing your art. I originally found/bought a coaster (bat) at Made during a Third Friday visit downtown Phoenix. When I saw the original would be shown at ASU, I made a trip to the museum to see it and the other exhibits at that gem of a museum. A follow-on of course, is the STEAM exhibit at TCA. I met some friends there and enjoyed all of the exhibits, but especially finding more of your work was so enjoyable. Your human anatomy work, from the intricate detail, color and scale, so awesome to see. Thank you for creating and showing your beautiful talent. I love the expression of “inside beauty” from the cellular, organ, system, skeletal. If I may, please tell me about your use of maps behind the animal/insect art. It is a great effect.
Thank you!
Karen

Karen, the maps tell the viewer about the subject.

About the bat: Invited to take part in an exhibition slated to travel overseas, Between Earth and Sky: Contemporary Art from the American Southwest originally travelled to China. Born and raised in the Southwest, I set out to focus on a creature  connected to each state I’ve lived in. The map, in the case of the bat, connects it to Arizona where it is the state mammal. I currently live in Phoenix near a large colony. Bats, in general, are in serious decline. I hope these thrive and continue to visit our neighborhood. On a practical note they help keep mosquito population down.

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The Cicada, one of the insects in the STEAM exhibition, is from Kansas City. Someone who saw the ASU show sent me beautiful cicada’s from her personal collection. It was truly a special gift. I quickly researched the insects and I am certain I will not take another one for granted again.  Kansas City sits at left center edge of the composition.

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I began using maps a few years back. My husband brought home a perfectly preserved Hercules Beetle he found in a mine in Superior, AZ. I keep the impressive specimen in my studio. You see the city highlighted in the lower center (green) area.

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The maps are part of the narrative – they supply information : How? Where?
How did the study originate? Where does the the creature come from?

I love knowing the coaster directed you on to museum visits.

pilar, spanish for pillar

When complete, my newest composition will represent a 4th generation of family members I’ve painted over the last few years. I’ve mapped both my parents, myself and my husband, my niece and now my nephew’s daughter. Another nephew is in the queue. I look forward to locating a venue and exhibiting the entire bunch one day.

My niece’s name is Pilar, she is 4 going on 5. I outline her on a Sunday morning. I can sense she is doing everything in her power to hold still. This is just my observation … stillness is not (yet) her forte. She is full of eagerness and excitement, is little but strong.

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I research human growth and development for the study including height, weight, and size of head. I note fine motor skills. I learn about growth spurts and growing pains. I wonder about what is average, above average or below average. It’s interesting to me how these things are determined. In terms of the general growth chart, Pilar will most likely be smaller than average because both her mother and father are. Perhaps the odds are high this will be true, though I’ll believe it when I see it. I understand more and more why things are measured and labeled but still I think wait and see. It’s probably best that I’m an artist and not a doctor. Or maybe a doctor might say this too, what do I know.

I complete the contour and begin detail. I must have started over at least 6 or 7 times. Because Pilar moves her hands and feet, those areas appears to also be in motion in the study. I have a similar issue with Lawson, a 2-year-old, whom I worked on previously. I trust details to settle as I progress.

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The word pilar is Spanish for pillar. It’s right I start with the feet and follow with the leg. While we think of the leg as the area from the hip to the foot, in fact it is only the area from the knee to the ankle – a most pillar-like form.

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Merriam-Webster defines pillar as :

1. A firm upright support for a superstructure. Did you know the legs govern the back? Yes they do.
2. A large post that helps to hold up something. The legs hold you – upright.
3. Someone who is an important member of a group. Yes, she is – all children are that.
4. A basic fact, idea, or principle of something. – Yes, yes. We are going there.

I always enjoy bringing in symbolic elements if I can…
Legs allow one to stand, walk, run, kick and dance. Think: support and locomotion. Out on my morning run, I am aware my legs offer me mobility, stability, and independence. Energetically they ground one in their individuality.

Consider ideas of oneness and unity. Think in terms of what you need to make a decision and take full responsibility. If you are split inside, feeling stuck before even taking a step, you hesitate. If in doubt, legs are not able to move straight forward, and in fear they move away. Note the energy of your legs as they move you to our destination – be open, strengthen and then move.

I consider Pilar running with freedom from one person to another, one thing to another. Her father says she is great on the monkey bars, of course she is! She does hold still for moments at a time. Or at least she tries …

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Crus, Latin for leg, includes the shin (front), the calf (back), the tibia (wider bone) and the fibula (narrow bone).

This morning I read an article on the meridians. I might try to indicate those channels. I understand meridians form at conception.

a cicada from kansas city

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“My mother is on vacation from Minnesota and texted me some of your images at ASU. I love them. I love bugs and bats and anatomy and maps and you have put them all together in the most beautiful way…”


“My husband and I are from Kansas City and are print makers…
…we dabble in collage as well so really appreciate what you are doing.
…Do you have any cicadas? …if you decide you would like some cicadas, I have quite the collection of them and would be happy to send some along for inspiration.”

A few weeks later a package arrives!

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This is the one I choose to study and paint. I find two used Missouri maps here in Phoenix – what are the odds of that! I plan on another composition soon.

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mixed media collage, 12 x 12″

Krystal shares more:
“….Aren’t they amazing. Right after they shed their husks they are completely white. I sit with them on my hand and watch them turn into their colors, their wings are tiny little clumps and then as they dry they uncurl and form into shape. It takes about 45 minutes and it’s the coolest thing to watch. Each group is a different size and marked differently.
…The orange wings came off small, all black cicadas from last summer. I didn’t keep their bodies because they weren’t particularly interesting, but I had never seen orange wings before. If I find them soon enough after they die and they are still flexible, I can pin the wings out and dry them that way. I am just fascinated with them. Glad you find them beautiful, enjoy.”

Krystal and her husband are artists and printmakers from Kansas City, Missouri.

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There’s magic and myth associated with Cicadas, worth looking up if you’re inclined. They symbolize carefree living, resurrection and immortality. They connect to the ideas of spiritual realization and spiritual ecstasy.

Thank you Krystal! Yes, they are amazing.

There’s more to this story, but I’ll save that for another time. I plan to show the Kansas Cicada, along with other studies, in the STEAM exhibition, opening next month at the Tempe Center for the Arts.

no woman is an island

The Onloaded Project I call Cella, opened (last) Friday night in the phICA containers on Roosevelt Row. The brightly lit boxes and the steady stream of visitors make the night memorable.

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OnLoaded boxes activate at sunset on Friday night.

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Last visitors as we prepare to close.

The evening is followed by the annual Phoenix Art Detour beginning Saturday morning and going through Sunday. Again, I enjoy steady visitors. I love watching how people move through the space and interact with the work. I manage a few sales.

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Richard Ross, whom I meet exactly one year ago when the Contemporary Forum visits my studio, drops in. I enjoy reconnecting. We talk art, materials and hanging systems. Interested in several works he decides on a flashcard painting – the Pancreas. These are small, two-sided (two views), 6 x 4″ studies that hang in line, together. He likes that it’s somewhat abstract and resembles something that might live underwater, a sea creature perhaps. Some of the glands in the set have that quality, yes I agree.

Thank you Richard!

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The Pancreas (part of the endocrine system), anterior and posterior view, mixed media, 4 x 6″

Will and Louise Bruder come into the container, while I chat with Richard. They too decide on a flashcard work – the eyeball – but not before Mr. Bruder congratulates me for representing Phoenix in the State of the Art exhibition at the Crystal Bridges Museum. They’d been to the ASU Art Museum the day before and note my work in the project room. I remind him we met years ago at a Burton Barr Central Library celebration.

He explains where and how he wants to hang the small work. He will enjoy it while drinking his morning coffee, he says, near an east facing window that allows in morning light. He’s pleased by the idea of seeing an eyeball – so appropriate, he says. He wants to know about the materials. Casein, I tell him, the Egyptians used it. The medium passes the test of time. That works for him.

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Before the weekend is over Ted Decker picks a flashcard out too. The bladder and prostate gland get his attention. I also call the image The Minister of the Reservoir and the Water Gate. I explain I also see the small drawing as a milagros (votive offerings). He nods with appreciation.

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The Minister of the Resevoir and the Water Gate, Front and Back view of bladder and prostate gland, 6 x 4″

It seems to me that having a Cella, a room of one’s own, to settle and reconnect to the self – feels appealing more now than ever.

Thank you Richard, Will, Louise and Ted.
And thank you to phICA for the invitation to exhibit – a unique experience, for sure!


The blog posts titled No Woman is an Island acknowledge the people and/or organizations who support me and the work I do.