My husband Mike does the Facebook thing, and earlier this week he posted a link to a collection of portraits of people who can’t see there. That post of his got so many comments that I thought maybe my blog would be a good place to explain how we met the photographer.

One of the portraits in the “Fade to White” project.

A couple years ago I got an email from a stranger who said he was taking portraits of people who can’t see. “I am emailing you to inquire if you would be interested in participating in the project,” he wrote. “It would be an honor to take your picture!”

Uh-oh, I thought. Another nutjob who heard about my job modeling nude for art students. Before hitting the delete button, though, I did a little research. And guess what? The guy was legit!

Charlie Simokaitis is a sought-after commercial photographer whose 13-year-old daughter has a deteriorating eye condition that will soon leave her completely blind. Faye Simokaitis is the inspiration for Fade to White, a compilation of the portraits her dad has taken of people who are visually impaired or blind. Charlie Simokaitis describes the project as an “effort to try to understand the impending reality” of his daughter’s loss of sight. From his artist statement:

As I spend more time with blind people, I am developing a perverse kinship with the very condition that will eventually lay claim to my daughter’s eyesight. For me, solace lies in the creation of this work.

After reading that, I hit the reply button on his email message. Y-E-S, my talking computer parroted the letters I typed. Sitting for a portrait would be an honor.

Charlie likes to meet with his models to chat before a shoot, so I suggested we meet for lunch at Hackney’s. Once Mike took a look at some of the portraits Charlie already had up on the Fade to White web site, he decided to come along. “These pictures are great, Beth,” he told me. “I want to meet this guy!”

Charlie is as striking as the photographs he takes. Over lunch, he told Mike and me a little about the research he had done before starting his project. Photographing the blind has its roots in street photography, he said. It was pretty much voyeuristic. “You know, the blind person would have no idea the photographer was there.” In contrast, Charlie wanted his subjects to know exactly what he was up to, and he didn’t need us to be grasping white canes or posing with our guide dogs. “Most of my portraits are from the waist up.” More from his artist statement:

This work looks at the unseeing Other while attempting to understand the fetishism of other people’s perceived pain and the taboos and tacit responsibility of representing a blind person.

It was hot the afternoon we scheduled the photo session, and I showed up wearing a dark red tank top. Charlie knew right away where he’d want me to pose, and our session took about an hour. “Look up at the sky,” he’d say. “Don’t smile. Look towards the sound of that truck. Chin down. Don’t smile. Shoulders back.” For most of my shots, I’m standing against a yellow brick wall in Printers Row Park. The session gave me an idea of what it might be like to be a fashion model.

Charlie used film to take his portraits, and he completed his project — and his Master’s thesis — this past year. My portrait is included in the collection, and it’s getting rave reviews. See for yourself: Charlie’s Fade to White photos are available online.

Mike and I were invited to a costume ball for Mardi Gras last month, and when I found out the theme of the party was “Hollywood” I asked my young friend Nicole Dotto to

That’s me as Annie, thanks to Nicole.

help with my costume. Nicole and I met as volunteers for Sit Stay Read here in Chicago. She runs a vintage clothing shop on Etsy and generously agreed to write this guest post about picking out a costume for me.

Wait til Beth feels what I got her!

by Nicole Dotto

Put together an outfit for someone who will not be able to see it?

Oh not daunting at all.

One of Beth’s memoir students cleaned out her closets recently and gave her two really beautiful designer suits: one bright red and one stunning green. Beth asked if I could think of any movie characters who wore either of these—that way she could wear one of the suits and dress up as one of them for the party. I found a photo of Ava Gardner in a red suit. Rear Window’s Miss Lonelyhearts wore a green dress that could have passed. Beth would have looked amazing as Tippi Hedren in The Birds, though Tippi’s suit was pale green. When we realized that my Hollywood characters would require some serious explaining at the party (“No, remember? the lady he was watching across the street? Lonelyhearts”), Beth shrugged and said she’d be happy to go as Annie Hall.

The more I started to share Beth’s real deal crush on Annie Hall’s look, the more we decided that this was the only way to go. and bonus: it was a little less daunting to complete that outfit. I perused the men’s section at two different thrift stores and found khaki pants, a white shirt, green tie with polka dots, black suede vest, and felt hat in less than two hours. the thrift store is my battleground.

I’d never been a personal shopper before Beth asked, although technically I’ve been personal shopping multiple times a week for the past three years. But that’s just for people that I make up in my head. I run an online vintage shop called DOTTO, and even though I have a whole lot of handsome and classic items for sale there, I carry a number of interesting train wreck pieces we can all thank the 1980s for, too.

That’s Nicole modeling the ‘WHO WOULD WEAR THIS?’ kind of thing she carries in her online vintage shop. (sorry, folks. It’s sold.)

I grew up with a slight aversion to shopping but then discovered it’s pretty fun when I am searching for everyone else in the world but myself. I try to vary what I offer in terms of size and style and BRIGHTNESS. I cannot physically stop myself from heading straight toward anything neon or overloaded with sparkle. My true test for items has always been this: if I can’t imagine someone wearing it, it’s just right for DOTTO. Those are the sort of items I am secretly really happy to offer the world.

But back to Beth as Annie Hall. Let’s be honest here. Beth would have loved the outfit even if I’d gotten all of the colors wrong or hadn’t been able to find the right vest or hat, but watching her feel each item and put everything together while I explained just how dapper the high waist and cuffed pant looked and how the tie had to be worn as long as possible, well, that was icing on the cake. The whole time I was there we kept talking about just how cool Diane Keaton is, but I was kind of thinking, huh, don’t you think the same is true for Beth in general?

Nicole asked me to let you blog readers know she’ll give a 10% discount20% discount discount at DOTTO to anyone who tells her they read this Annie Hall post. Look for the discount code here in the comment section, and shop away!

Two of the memoir-writing classes I lead each week are sponsored by Lincoln Park Village, a non-profit organized by older adults who want to age at home. The Village boasts over 300 members, and its classes — everything from meditation to a “boot camp” that enhances memory  —  meet in people’s homes.

To kick off the new year, the Village Newsletter took an in-depth look at the human brain and perhaps it’s most valued — and vulnerable — aspect, memory. Hollis Hines, a writer in my Monday afternoon writing class, was asked to write an article for that newsletter about how blindness affects her writing teacher’s ability to remember things. Here’s an excerpt from that story:

The visual memories from the 26-year-old girl she was, understandably, are frozen in time. In some respects she will never age, nor will her family and friends; they and she are as they were in her perception long ago.

My sister Cheryl loves this about me, and just last weekend a friend from college happened to mention how she enjoys this aspect of my blindness as well. Both of them follow my blog, so I hope they aren’t too disappointed to read that Hollis also pointed out in her article that I am aware those perceptions may no longer be accurate! “But with no visual cues to replace them, the past is the present. Perhaps this partially explains the spunky, youthful energy that Beth exudes.” Ha! Maybe blindness does have its advantages after all!

This might be what Hollis means by spunky.

Hollis explained how I sing a song of the list of U.S. presidents my great-niece Anita learned in school in order to navigate the streets in the Loop — “Madison, Monroe, Adams, Jackson”  —  and how I do simple math in my head for banking in order to keep an edge with numbers.

She swims at least 20 laps in a pool, and the first lap she thinks about what she must do today, and with each subsequent lap she thinks of a day in the future. That way she exercises both body and brain.

Questions Hollis asked when she interviewed me for the article got me thinking about how blindness can serve to both enhance and foil my memory. The lack of visual cues really does help me remember things: I’m not bothered by visual distractions. On the other hand, without seeing words in print, I can have a hard time remembering the name of an item or of a celebrity, much less how to spell them.

My mention of celebrities during the interview left Hollis wondering if I get any enjoyment from movies or television. Not really. It’s too much work keeping up with the action and the characters. I told Hollis I’d rather listen to an audio book, and that’s when it dawned on me. “You know, with all the imagining and memorizing I do all day long,” I told her, “Living my life is like reading a book!”
Hollis agreed and added, “it’s your own book of non-fiction.”

Needless to say, she got an A+ in class the next Monday.

People stare at my Seeing Eye dog and me sometimes. Who can blame them? We’re an unusual pair! But as long as they’re watching, I want to look good.

So when I heard that the Segal Design Institute at Northwestern University was looking for projects to help people with disabilities, I suggested they have their undergraduates try to come up with some easy way we blind folks could identify the color of our clothing. Right now I put a safety pin in the tag of anything I own that is black, and a paper clip on anything white. I wear other colors, too, and I memorize what color those other things are by the feel of the clothing.

My proposal got a thumbs-up, and one of the students agreed to write a guest post to explain what the design experience has been like from his point of view.

Design thinking

by Nadhipat “Ebay” Vaniyapun

My name is Ebay and I am one of the engineering students at Northwestern University working to create a color identification system for Beth. Design Thinking and Communication is a required class for engineering students, and I believe that it is required for a very good reason. There is no other class that gives you real design experience while putting the fruit of your hard work back into helping the community.

I actually chose to study at Northwestern partly to take this class. I went to Concord Academy in Massachusetts and did a number of engineering projects in high school, including a custom physical therapy walker for a toddler who has cerebral palsy. Our walker had the same functionality as a commercial walker, but it can be disassembled, it’s adjustable for his growth, and it includes a board for him to play with his toys. It was really something to see a little kid being able to walk and play without falling over, and to realize that he didn’t have that kind of freedom until we made that therapy walker for him. You could say I was hooked from the get-go.

I admit I didn’t know much about blindness before starting this project. The last time I had any real contact with someone who was blind was probably when I was around 8 years old living in Bangkok, Thailand. I visited what could be called a nursing home for the blind as part of a school service trip. Everyone there was blind from birth and could read Braille. They got most of their income from crafts, giving lectures and receiving donations. I didn’t see their wardrobe, but I remember that the speaker wore plain, dark colored clothes while the kids wore something with mismatched colors.

With that vague recollection in mind, I couldn’t quite connect the dots with this project prompt until I met Beth for the first time. I just didn’t expect her to have a large wardrobe of clothing that wouldn’t go well together. I didn’t expect patterns or a lot of colors. I was also completely unaware that there were so many people who went blind later in life, and that not all of them read Braille. I just never thought blind people might put this much thought into the clothing they wear.

Students observed Beth sorting through her closet, looking for ways to make it easier.

This project is very different from my high school projects where I worked with tools I was used to and could easily imagine how I’d solve the problem. I guess I do miss using lots and lots of power tools a little. Fabric is not a very common engineering material, and all of us on our team even learned how to sew in order to speed up the mock up process. You also really have to use your head to make the color identification system as intuitive as possible, knowing that the user’s perception and priorities are different from you. Even if you pretended to be blind, you wouldn’t be able to pick up small details from touch or know what features of the clothing a blind person would use to pick it out from the rest.

Working with Beth has been a pleasure. There were even times when we felt uncomfortable ourselves asking difficult questions but she had no problem answering us. Thanks to that, we got a lot of unexpected data and are now incorporating everything we learned into our designs. Two things that still get me every time we visit her is how dark her room is and how many articles of clothing she can identify quickly through touch. I’m sure we wouldn’t be able to do the same without lighting.

We’ve gotten close as a group through this project. We usually meet twice a week, have a team dinner on one of the days and occasionally hang out even when it’s not about class. Every time we visit Beth, we also eat together at the restaurants in the area. I know my team a lot better now not only as colleagues, but also as friends. I have enjoyed everything I’ve done so far, and I have no doubt that we will deliver an excellent prototype.

Other Design Thinking and Communication classes at Northwestern are working on different projects to help people with disabilities, and all 50 teams will present their completed projects on Saturday afternoon, March 16. Awards for design and communication will be announced that day, too.

At Oglesby last week.

Last Friday Whitney and I visited an elementary school in a South Side Chicago neighborhood that’s been the center of a national focus on violence and guns the past couple of weeks. That very day, President Obama was at a Chicago high school nearby giving a speech about his new antipoverty policy initiatives. Our mission at Oglesby Elementary was far less controversial: Whitney and I were there to talk about writing, Seeing Eye dogs, and what it’s like to be blind. Judy Spock (a writer in my Thursday afternoon memoir-writing class) has a neighbor who works for a Montessori program at Oglesby, and the two of them accompanied Whitney and me on the visit.

Judy sat at my side while I talked to the kids, and as she rhythmically flipped through Hanni and Beth: Safe & Sound to show off the beautiful illustrations, she noticed a boy in the class had his hand up. “Can you color?” he asked. I could, I said, but I’m not very good at staying in the lines. “Can you paint?” I had to consider this one a bit. “I could get the paint on the brush,” i said. “But whatever I painted would be kind of, well…abstract.” Next question: “What’s a stract? Hmmmmm. “I guess I meant it’d be a mess.”

The finger-painted wreath.

The class grew quiet. I didn’t have to see to know their little minds were thinking, thinking, thinking. All of a sudden another hand shot up. “You could finger paint, couldn’t you?” a little boy asked. “We made a wreath!” And just like that, all of them started talking at once. “It’s right there! Behind you! We painted it with our fingers” I turned around to look. Don’t ask me why.

“No, over there! Not there! Behind you! On the wall!” Judy to my rescue. She turned around, looked up at the wall behind us, and described a huge piece of paper with a beautiful green circle of painted handprints: a holiday wreath. The boy was right. I could do that. “Maybe you and that dog could come next Christmas to try,” one of them said, which led to the next question. “How does the dog know where to go?”

I’m the one who tells Whitney what direction to go to get our errands done. I told the kids how we travel one block, she stops at the curb, I tell her,  “Good girl, Whitney!” Then I give her a direction. “Whitney, left!” She turns left, I tell her how smart she is, and we go to the next curb. “Atta girl, Whitney! Good girl!” I say, then give a direction. “Whitney, right!” Whitney turns right, and we’re off again. I explained how I listen very carefully for traffic when we have to cross a street. When I think it’s safe, I command “Forward!” Whitney looks both ways, and once she’s made sure it’s safe to go, she leads me across. More questions followed:

• How do you wash up?
• If you can’t see, how do you know where the doorknob is?
• If you can’t see, can you play any games?
• Did that dog write the book by itself or did you help the dog type it into the computer?
• What if you got to a hole in the sidewalk and the dog took you around and right then a big bus came by an beeped really loud and you fell in to the hole?
• How do you know where to press your fingers on the piano if you can’t see the sheet of paper?
• Why is your hair so blonde?

That last question gave me an opportunity to tell them how I tap the lane marker to keep my place when I swim laps, and how the chlorine in the pool makes my hair turn lighter . “Do I look like Beyonce?” They chorused a joyful, “Yes!”

Just as it was getting time to leave, one girl asked, “How can that dog keep you safe?” She must not have been listening when I’d explained our routine at the stoplight, or what Whitney does to prevent us from falling into holes. I repeated my story about Whitney checking both ways before we cross a street, and then Judy and her neighbor led Whitney and me out to the car. We spent the entire drive home yammering about the delightful and curious kids at Oglesby and how thoughtful their questions were.

It was only when I got home and turned on the radio that I realized that last question might have been about a different sort of safety. The radio story said that in his remarks that afternoon, President Obama had paid tribute to 15-year-old Hadiya Pendleton, who had attended a high school near Oglesby. “Too many of our children are being taken away from us,” the president said. “last year there were 443 murders with a firearm on the streets of this city, and 65 of those victims were 18 and under. So that’s the equivalent of a Newtown every four months.” The school where the kids want me to come back and fingerpaint is located at 7646 S Green St., right where the Englewood, Auburn and Gresham neighborhoods meet, and on the Friday we visited, the Chicago Red Eye reported:

In Englewood, a 29-year-old man was shot to death Friday in the 6900 block of South Morgan Street, officials said.
Englewood has recorded three homicides so far this year. This South Side community area logged 21 homicides last year, RedEye found.

Oglesby Montessori is a free, open enrollment, elementary school that is a part of public (non charter) Chicago Public Schools. You can help them grow by letting Barbara Byrd-Bennett, CEO of Chicago Public Schools (773-553-1500) and Mayor Rahm Emanuel (312-744-3300) know that the Auburn-Gresham/Englewood neighborhood deserves an ever-growing and expanding Public Montessori school.