Thankful Every Day

Blind Artist Vision: blog by Stella De Genova

Being legally blind is something I live with every minute of every day.  In my regular daily routine at home, one might think I can see pretty well because I am so used to how my home is set up.  To someone who doesn’t know me well, you will see me cooking, cleaning, watching my grandkids and, of course, painting in my art room.  What you may not notice are my behind-the-scenes helpers: such as my husband sweeping up after me in the kitchen and helping with the grandkids.  I also get help from my family in sorting the colors of my pastels.  And I can’t forget my cousins/personal shoppers, who help me find the color I want in a new outfit and read the price tags for me.

The retina disease I have is called retinitis pigmentosa and worsens a person’s vision at different stages in their life and can affect vision, ranging from mild to total blindness.  For me, it started with “night blindness” at an early childhood age.  It has gotten progressively worse through my life and brings me to where I am today.  I am not totally blind in good lighting, but even in daylight, I have no peripheral vision, no depth perception, no color perception, and what I do see is blurry.  Much of the time, I make out shapes but don’t always know exactly what I am looking at.

I learned early on  that I wouldn’t be able to do all of the things sighted people could do. 

I cannot drive but have always had good friends and family to get me where I need to be.  I learned to use public transit to get back and forth to my job (when I was still visually able to work).  This inspired my son, who now works for the Chicago Transit Authority, to create more accessible signage and assistive technology for people with disabilities.

When I was working and coming home and navigating crowds during dark winter rush hours, it was pretty scary for me because I wasn’t using a white cane yet.  I didn’t know who or what I might stumble into and others didn’t know that I could not see.  Every walk from the office to the train left a knot in my stomach. 

I fall into the long winter

Bottomless hole.

Cold blanket of darkness

wraps around me.

Night seeps into my skin.

This disease is like

Thick iron prison bars multiplying

one between the other

My view narrows, slowly

Day becomes endless night

Positive becomes negative.

Blurred lights float

Suspended against black canvas.

I edge through silhouettes

Heads and shoulders without feet

Voices talking to no one.

Shadows crowd me

I met one of my best friends during a train shutdown due to a huge wind storm.  We couldn’t get on any of the crowded buses and she, a stranger at the time, offered for us to share a cab.  Afterward, we’d see each other on the train and talk, and have been friends ever since. 

And I’ve made another good friend due to my vision loss.  I set up a sighted guide tour at the Art Institute of Chicago.  The woman who was my museum guide was very nice and we hit it off.  She doesn’t live far from us and we started getting together for dinners.   She is also an art history professor so we get to share art stories.

Eventually, I had to stop working as a legal assistant because I could barely see print on a page anymore.  That is when I discovered Second Sense, the blind service organization that helped me feel comfortable in my own blind skin and, most importantly, helped me get used to using a cane so I can get around safely.  In gratitude, I volunteered for Second Sense for several years and have made good friends through our time together.

Second Sense’s annual  low vision art exhibit has also helped me gain self-confidence in my ability to create art. 

Once retired from the work force and with my kids grown, I started spending more and more time with my passion for art.  I started some art classes and still enjoy a pastel class with an instructor who has always been understanding of my vision disability and always offers positive critique.  We are now more than teacher and student – we are friends.

I was always my worst critic but art is my thing, so I can’t stop trying. With my worsening vision, I have learned to paint a bit more loosely and expressively, and have come to enjoy it.  Not being able to see the “correct” colors can be frustrating but also surprising and interesting.  I don’t think I’ll be winning any prizes for color theory but maybe I’ll get an honorable mention for creativity.

Here are two of my paintings that had unusual color palettes which worked surprisingly well.  Respectively, View from the Danube and London Fields.

If I dwell on certain moments in life, I can feel disadvantaged – like not seeing the smiling eyes of my daughters when they walked down the matrimonial aisle or even the beautiful detail of the lace on their gowns.  When looking at the little newborn faces of our grandchildren, I have to be up close and in good light to try to see their perfect features.

What do I miss seeing most? – Colors, faces, reading the print in a book.  I can admit that I’m not always an optimist but more often than not, I try to find the good things in my life and more importantly, I try to teach my children and grandchildren to find something to be thankful for every day.  Personal challenges can be large or small, and being blind is no little thing but I consider myself to actually be very lucky in this life.  I have loving family and friends and, with or without sight, this will always be what I am most thankful for.

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