My Latest INSIGHT

An Introduction to my latest series; a work-in-progress.

(The first two posts are pinned. Then my blog continues in chronological order.)

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I have been making art seriously since 1970. Whether working in photography, painting, drawings, prints or video, the efforts are always done as a series. Though I was diagnosed with Stargardt’s Disease in the late 1990s, this did not affect my methods for another twenty years. Then, slowly, betrayal. With increasing visual impairment, my approach to making art required change. 

First, my central vision became distorted, then slowly “whited out.” Dr. Tsang, my opthamologist, said it was progressive, but I would never go blind. I would always have peripheral vision. “What about driving? And reading? Drawing?” I asked. He didn’t answer.

Accepting this, in 2017, I stopped doing commercial work to concentrate solely on my art, and began making plans to leave New York City. In the two plus years it took to sell, move, rent, buy, and move in, I stopped painting. I continued writing, but I knew that my next efforts would focus on how to express myself with diminishing visual skills.

INSIGHT 2 cover
INSIGHT 2 cover
Silo Birch Loss
Silo Birch Loss • March 2020 print 30″ x 22″

To that end, in 2019, I began a new series: I call it INSIGHT. I cannot replicate my vision for you (nor do I want to) only convey my experience; that is, my frustration and my vulnerability – but also my joy while finding a method for making meaningful images. My creative journey IS the destination. INSIGHT is my paper trail.

First efforts were prints; a combination of free verse and past paintings or photos. I bound replicas in a softcover volume. Three months later, I republished it with additional explorations. Available here.

Desiring a larger format, a year later I published a limited edition broadsheet INSIGHT 3: LEMONADE.

Nine months later, I followed that with INSIGHT 4: EXPRESS. I have found a direction. These are my strongest images. In the published tabloid, they are accompanied with a running narrative. If INSIGHT 1, 2 and 3 are day trips, EXPRESS is a long term encampment. Available here.

In the Fall o 2022, I began INSIGHT 5. I am calling it HOPE. I write about it in the post EUREKA!

LEMONADE cover
INSIGHT 3: LEMONADE cover
cover INSIGHT 4: Express
INSIGHT 4: EXPRESS cover
cover INSIGHT 5: HOPE
INSIGHT 5: HOPE cover

My Big VIP Adventure

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M ore than 20 years ago, I was diagnosed with late onset Stargardt Disease. It is a progressive form of macular degeneration where the build up of Vitamin A kills retina cells leading to central vision loss. I cannot read a menu or a book. By comparison my peripheral vision is absolutely amazing.

amsler grid - me
How I see the Amsler Grid

This blog is my journal of how I am adjusting as a VIP (visually impaired person). Adapting to Vision Loss is a bit like going through the stages of grief. Consequently, I have quietly experienced periods of denial, anger, bargaining, depression and acceptance. as well as sporadic moments of profound philosophical insights into , cribbage, shoveling snow and the human comedy.

A timeline of that path would include: Eight years ago I stopped playing basketball. Six years ago I stopped driving Five years ago ended my commercial graphic design business as my skillsets slowed,. Two years ago I stopped reading print, transitioning to software that converts text-to-speech. Last year, thanks to ZOOM, I hired an assistant to screen share and aid me with intricate computer tasks. Technology Rocks. I ❤️ Voice Over.

As an artist, the impact has been disturbing. but I am determined to not let that defeat me. I am resolved to persist and record this journey. –KBS June 5, 2021


A Review Within a Preview of a Possibility

While finishing a print series, I test my Meta Ray-Ban glasses as a studio tool.

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NOTES: Best viewed in Full Screen. Click the icon in the lower right next to the sound icon.)

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 Losing my central vision sucks.

Fortunately, there are now many excellent electronic aids that assist with this and other disabilities. Unfortunately, they all require learning new skills.Thankfully, I became technically proficient before losing my central vision.

As an artist at TIME magazine in the 1990s, I worked on the front lines of the digital revolution when the Electronic Age took over. It was a very exciting time. Inevitably, as so many tools and resources became available, digital expression became a goal for me (see MEDITATIONS).

Being able to magnify up to 1600% has made my computer and 32” monitor indispensable visual aids—along with my iPhone and iPads, of course. Yet, I miss my studio. Creating there is as instinctive to me as cooking in the kitchen is for you. Paint, pencils, pastels, paper, brushes, etc.—these are essential to my artistic identity. They are second nature, though because of Stargardt’s, I still cannot see where the pencil meets the paper. No, that has not changed despite all the new assistive software. I still have the talent but have lost essential control. Even so, I want to be in the studio while exploring and adapting new methods—ergo, INSIGHT.

Perhaps my Meta Ray-Ban glasses, with their built-in camera, can help. In the video above, I test them while completing an edition of prints for a client. It just might be a new recipe.

 


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Amazing! I Can Read!

One small step for me. One giant step for the visually impaired.

We went out to eat with friends, and for the first time in five years, I was able to read the menu.

Amazing!

the restaurant menu

How? By using the META RayBan glasses. That was in early December and since then, I have been learning how to use them.  Here is a summary.

The glasses use a camera built into the frame that connects to META artificial intelligence from the internet via my iPhone. With the glasses on, I picked up the menu and commanded, “Hey META, what am I looking at?” I heard a camera shutter click and  three seconds later, “You are looking at a menu from a restaurant or cafe. It appears to be a brunch menu, with various food and drink options listed.” (See the full AI exchange below.)

Fantastic!

As I understand it, the camera takes a picture, sends it to META.AI, who processes the data and reports a summary of that image.

Wonderful!

It has taken me time, but I have learned some prompts to use to proceed past summary and have it “read” to me. I have also learned there are limitations as to stability, connectivity, and how much it can process. But when it is working, I can listen to music, take photos, videos, send text messages and make phone calls, as well as search the internet, all hands free.

Me taking a photo with my Ray-Ban glasses

I take it to museums to read the wall text. I use it to read package labels and some mail. I take it with me when shopping, where it explains the labels.

But there’s more. META has also partnered with Be My Eyes.  This is a free app that uses the phone to call a volunteer who assists me based on whet they see from my camera. I used it for the first time last week at Trader Joe’s when I had four items I could not find. The speakers are built into the frame and sit right above each ear. The quality is excellent and surprisingly private. 

Fantastic

All of these features result in a HUGE advancement in accessibility for me and the VIP community.

And this is just the beginning.

EUREKA!

My AI sessions are recorded on my iPhone META View app.  (Screenshot below You can’t read the screenshot? Okay, here is a recording made with Voice Over.)

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cafe menu
Screenshot of the MetaView app settings page.

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Stargardts is Ravaging My Retina

What does macular degeneration look like?

Show and tell with my ophthalmologist

In 1998, I was diagnosed with Stargardts Disease. Since then, as my vision degraded, I have been getting annual checkups. The first images of my retina were taken with a Nicon camera. (Do you remember film? So much has changed in 26 years.) Last week, with my phone, I took video of the appointment with my ophthalmologist. Above is an excerpt of the doctor explaining one set of electronic scan.* 

For comparison, below are scans showing a healthy retina and mine in 1999 and 2021. The black areas are dead cells caused by the buildup of toxic byproducts.**

Retina Scans

Comparing the 2021 scans to the scans in the video, there does not appear to be much difference. This was surprising to me. I feel my sight is much worse. Three weeks ago, I was at a park that I hadn’t visited since last spring. Looking out across the lake, I couldn’t make out what was on the other shore. Last year I could.

Knowing my annual eye appointment was near, I was determined to see the scans and compare them to earlier ones. The degeneration appears to be slow, but not in my comprehension of visual information. What will the next year bring?

*See also Diagnosis and Management of Stargardt Disease

**The buildup is caused by variants in the ABCA4 gene, which prevents the ABCA4 protein from removing these toxic byproducts. The ABCA4 protein is involved in transporting a retinal phospholipid compound that helps remove potentially toxic compounds from photoreceptor cells.  –National Eye Institute

A link to my 2019 exam with my Columbia Presbyterian ophthalmologist in NYC .


Discovering The Vision & Arts Project Exhibit

An exhibit of artist with macular degeneration just happened to be on view when I returned to Gotham to visit friends and museums in April.

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In March, a university student contacted me for an interview. She was writing her thesis on artists with Stargardts disease and was looking for subjects to talk about their experience.  In the course of our communications, she asked if, during my upcoming trip to NYC, I would be viewing the Vision and Arts Project exhibit What Was Once Familiar?

“Who?” I had never heard of the Vision and Arts Project.

She explained that The Vision & Art Project gives greater visibility to the overlooked influence of macular degeneration on historical and contemporary artists. Founded in 2013, VAP is an initiative of The American Macular Degeneration Foundation. This would be their tenth annual exhibit.

“What?! These are my people! And I have never heard of them!?” Amazing. The exhibit at the National Arts club in Gramercy Park was my first stop on my first day.

All the artists were of great interest to me, but I am going to focus on just two. 

The Morning of September 11th, 2001 8:45 SM  pre macular

Robert Birmelin‘s paintings were the first I encountered. The Morning of September 11th, 2001 8:45 AM pre-macular demonstrates Birmelin’s talent for photo realism that becomes haunting after reading the title. Painted in 2002, it is a powerful expression of time, place and mood. By employing photo realistic accuracy, he contrasts droll everyday routine with the impact of historical tragedy.

The Red Room 2004 post macular

His complex post macular Two in One and The Red Room both 2020 are expressionistic images that also captures time, place and feeling with inventive distortion and color that becomes immersive as I unravel their compositions.

Both his pre and post macular paintings were very accomplished, but knowing that he had to adapt his technique due to the limits of his visual impairment deeply affected me. It is a reaction I might not understand if I was not also post macular. 

A short video of some Robert Andrew Parker paintings pre and post macular degeneration.

The video shows some small landscapes but it was the monkeys the “spoke” to me. Having made some Flora with Simians in 2011 (see on page 2), I was intrigued by his subject matter. It appears that he resolved his impairment by working large.

I now know that the landscapes were post macular disease. Their size might be because they were done in situ. I will investigate further. See VAP page with video

Viewing the paintings was meaningful to me in a visceral way. Now, researching and writing about the artists has only deepened that experience. I highly recommend Alice Madttison’s insightful overview Freedom from Specificity, written for the exhibit catalog. It explores in greater depth what I have only touched on here. On view March 20 to April 22, 2024.

Remembering Normal

U C me. I C U. Hmm. Sort of. Well, not really.

Vera toasting a beautiful day

As my central vision has degenerated over the past six years, I have been adapting to accommodate my limitations. For example, watching television, shaving, reading email and clipping my fingernails. These all require workarounds.

When having a conversation at a normal distance, I don’t see the other persons face. There is just a gray blur above their neck. To see their facial features, I look to the right and down, just above their shoulder.  That is my peripheral strong spot. Even though I don’t see their expression, by looking towards their face, I assume that they are unaware of my deception. For them, everything is “Normal.” This is just one technique I have developed to limit being “different”.

Or so I thought until last night when I had a conversation with my wife at the dinner table. She said she misses eye contact with me. I was stunned. It may not be as obvious to others, but with her, my work-around is a FAIL! 

Merde! Social interaction and non-verbal communication by eye contact is becoming just a memory. More critically, it is essential to intimacy. I am being deprived but didn’t realize it because this has happened so gradually. Writing about it here, I realize how much I miss it. 👁️


EUREKA!

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Four paintings: Epsilon, Beta, Mu, Nu
11″ x 17″ mixed media on paper

Since I no longer have central vision accuracy, I need a new approach to making art. I began this series of paintings layering gesso, watercolor washes, oil stains, varnishes, markers, gauche and acrylics on top of printed graphics. This was done with the goal that the viewer would “read” the layering history and ‘feel’ the contrasting textures, as they explored the intuitive compositions. Though I infuse the work with my intent, each viewer brings their own interpretation. 

 BRAVO! They talked to me. Observed in situ, I was very satisfied with the results. That is until I photographed them for my book and website. Reduced to a flat image, their sensuousness was lost. This was a serious concern as print and screen are  primary modes for exhibiting my efforts. This affects all future INSIGHTs. The Medium is the Message.

Then, about two months ago, I discovered a solution… of sorts. Instead of photographing the work with traditional balanced lighting, I found that using a stronger light on the right, cast shadows that emphasized the three dimensionality. EUREKA! I started adding shallow objects, wire, string, thread and, as Summer arrived, pieces of nature. This is an important improvement. Maybe only a slight one, but I am grateful. It seems Evolve and Adapt is a theme for my limitations.