Gus loves to get out, and every other Saturday he goes to dinner with Bobbie Ladwig’s family. Here he’s getting attention from one of Bobbie’s daughters.

The emotions that come with loving an adult child who has significant disabilities can be difficult to put into words, but when a reporter interviewed my husband Mike for a story about our son Gus in this month’s Bethesda Messenger, Gus’ dad found just the right things to say.

Gus and his three roommates moved into a four-bedroom ranch house in Watertown, Wisconsin in 2006, and the story is an update on how they are doing now, seven years later. The house is supported with 24-hour staffing, and when he’s home, Gus loves sitting at the front window and watching kids play baseball in the small park across the street. Thing is, though, Gus is hardly ever home!

Our son rides a van to a nearby workshop on weekdays, and on his days off, Gus goes to music concerts, attends baseball games, visits the zoo. This weekend he’s going to a carnival with Bobbie Ladwig, one of the direct support professionals at his house. It’ll be Gus’ first time on a Tilt-o-Whirl, and I don’t know who is more excited, Bobby or Gus. In the Messenger article, Bobby tells us that a favorite activity for Gus is eating out at local restaurants :

Ladwig’s wife and six children have become part of the routine. “Every other Saturday, on the days I work, my family meets all of us at the selected restaurant,” Ladwig said. “My kids really look forward to seeing the guys and it is a great time.”

Uprooting Gus seemed daunting to us at first. We would have rather had Gus live in a group home closer to our apartment in Chicago, you know, so we could drop by whenever we feel like it, take him out for ice cream, bring him home to visit now and then. Illinois ranks shamefully low when it comes to providing services for people with developmental disabilities, so Mike and I felt extremely fortunate and grateful to find Gus a home in a facility hours away in Wisconsin. His house is run by Bethesda Lutheran Communities, Inc. “Things have been good for Gus. He gets out of the house and there are plenty of things that he is doing,” Mike told the Messenger reporter. “We have faith in the Bethesda organization.”

On our drives home from visiting Gus, Mike and I always talk about relocating to Wisconsin ourselves. Until that happens, we take great comfort in knowing our son is in good hands, and that he’s healthy and very happy.

Gus benefits from living in a regular neighborhood, and the community benefits from having him out there with them, too. “We used to come up to make sure Gus was OK,” Mike said. “Now we come just to visit him.”

I plan on starting the “Smelling is Believing” workshop I’m leading at Northwestern University’s Summer Writers’ Conference tomorrow sharing accounts of magazine and newspaper editors I’ve worked with who have doubted that a person who is blind could write a good story. You know, like the editor who asked me to write about Miss America, but then wondered out loud if a blind person could interview a beauty queen.

One handout I’ll pass out at the workshop has excerpts from books I’ve read the past couple months. Each excerpt is an example of an author setting up a scene without using their sense of vision to describe it. Here are a few examples, and please forgive any spacing or spelling errors — I transcribed these from the audio versions I listened to, and in some cases I had to make guesses:

• From Canada by Richard Ford: “At the end of these evenings, it was before eight o’clock, when Charlie would pass through, having checked the goose pits, and was telling the sports to go to bed since they’d be rising at four. I’d climb the stairs back to my room and listen to the hunters climb up to their rooms, laughing and coughing and honking and clingingclinking their glasses and bottles and using the bathroom and making their private noises and yawning, and boots hitting the floor until their doors closed and they’d be snoring. It was then I could hear single men’s voices out on the cold main street of fort Royale, and car doors closing, and a dog barking, and switches working the grain cars behind the hotel, and the air brakes of trucks pausing at the traffic light, then their big engines grinding back to life and heading toward Alberta or Regina, two places I knew nothing about.”
• From The Humanity Project by Jean Thompson (this is a description of Mrs. Foster, a new widow): “First there had been Mr. Foster, all dead and tragic. Kristy heard the story a number of times, because it was Mrs. Foster’s heart’s sorrow, the story she’d been left to tell, how she screamed in disbelief when she’d come home and found him, had fallen insensible on the floor, awakening in the dark next to the dead man, how she had touched his knees, and then his old face, speaking to him in an ordinary way about things she had done that day. It wasn’t the kind of conversation he had ever taken much of an interest in, and so she was used to talking to herself. There was only a little bit of normal space before she had to get up, make phone calls, and get on with the business of death.”
• From Catcher in the Rye by J.D. Salinger: “I went to my room and put some water on my hair, but you can’t really comb a crew cut or anything. Then I tested to see if my breath stank from so many cigarettes and the scotch & sodas I drank at Ernie’s. All you do is hold your hand under your mouth and blow your breath up toward the old nostrils. It didn’t seem to stink much, but I brushed my teeth anyway.”
• From White Dog Fell from the Sky by Eleanor Morse: “He left the door open to the night air, to let the heat of the day out. The polished concrete floor at the entryway was cool on his bare feet. Through the darkness, he felt his way toward the bedroom with his hands and bumped into a wall. When he stopped, he still heard that low, deep hum. He lay in the small bedroom with his eyes opened and imagined the thousands and millions of people on earth who would never be alone the way he was alone tonight. Every sound he heard was large: the wings of a moth, the donkey boiler outside groaning as the water inside its tank cooled, the creak of the floor in the living room. The room where he slept was the same size as the house he’d once shared with his mother and five brothers and sisters. In this house, there were still six more rooms, some of them much larger than this one. A small village could live here.”
• From The Wife by Meg Wolitzer: “Then Dinner was placed in front of us, and we ate that, and drank wine, too, and we settled back into our seats for the ride. Hours passed, and eventually we reached the time in any trans-Atlantic flight when travelers fall into a kind of shallow sleep, eyes skittering beneath their lids. No dreams penetrate the endlessly rebreathed air above everyone’s lowered or thrown-back head.”
• From The Round House by Louise Ehrdrich: “I fell asleep on a plastic couch and someone put a blanket over me. I sweated in my sleep, and when I woke, my cheek and arm were stuck to the plastic. I peeled myself unpleasantly up on one elbow. Dr. Eggy was across the room tending to Clements. I could tell right away that things were better, that my mother was better and that whatever had happened with the surgery was better. And in spite of how bad things were, at least for now, the picture wasn’t getting any worse. So I put my face down on the sticky green plastic, which now felt good, and I fell back asleep.”
• From When I Left Home by Buddy Guy: “I’ll spend the rest of the day in the kitchen. Maybe I’ll cook up a gumbo with fresh crayfish. When I was a boy, crayfish tail was bait. Now, it’s a delicacy! The rice, the spice, the greens, the beans. When I gets to cookin’, when the pots gets to boiling, and the odors go flowing all over the house, my mind rests easy. My mind is mighty happy. My mind goes back to my uncle, who made his money on the Mississippi River down in Louisiana where we was raised. My uncle caught the catfish and brought it home to Mama. That fish was so clean and fresh, we didn’t need to skin it. Mama would just wash it with hot water before frying it up. I can still hear the sound of the sizzle, and when I bit into that crispy cracklin’ skin, and tasted the pure white of the sweet fish meat, I was one happy little boy. That’s the kind of food I’m lookin’ for. I’m looking’ today, and I’m looking’ tomorrow, and I’ll be lookin’ for the rest of my life.”

It’d be silly for me to suggest that writers should do away with visual descriptions altogether, but hey, smell, touch, sound and taste sure can bring you to a place, can’t they?

Here’s a guest post from my husband Mike Knezovich:

Beth’s in two distinct minorities: She’s blind. And she’s one of the minority of people who are blind who also use guide dogs. (I’m leaving out that other ultraminority she’s in — you know, the group of people who have had a benign tumor the size of a marble on their aortic valve).

Which is all to say, she’s even more memorable to people than she would otherwise be. (And that’s saying something.) Our friends and acquaintances are justly curious about her blindness — and equally or more curious about the guide dog companions she’s had over the years. Consequently, they take special note when they see articles or TV features about other people who are blind and especially about other blind people and their guide dogs.

So, a week or so ago when the Chicago Tribune  ran a story about a war veteran who’d lost his eyesight in battle and who had to retire his first guide dog, lots of folks read it, loved it, and sent it to us or told us about it. Beth did read it and said it would push every sentimental button a human could have.

I didn’t read it because, well, I don’t read most of this stuff because — not to be too flip here — I live it. I don’t need my heartstrings tugged, I know about blindness, I love Beth’s dogs and I’ve lived through three retirements. I don’t need to seek out heart-wrenching experiences. And, to be honest, the writers often sentimentalize the stories in ways that I find a little condescending and often find impossible to believe.

Well, apparently, this story about the veteran was truly unbelievable. As in totally false. Yesterday, via The Beachwood Reporter — a fabulous Web site from Steve Rhodes that keeps an eye on journalism in the Chicago area and sometimes beyond — this little link popped up on my Facebook page:

http://www.chicagotribune.com/news/local/ct-met-sunday-reader-note-0728-20130728,0,1907352.story

It’s lengthy correction from the Tribune’s editors. An excerpt:

A July 21 story about a blind man and his guide dog contained major inaccuracies.

The story stated that the man was an Army veteran who lost his sight when a roadside bomb exploded. In fact, the man, John Maley, acknowledged in an interview late last week that he was not in the Army and that he lost his sight to diabetes.

Problems with the story came to light after a reader contacted the newspaper questioning the account of how Maley became blind.

The inaccurate information was provided to the Tribune by Maley, and we failed to seek corroboration for his story.

Because of that, the story contained a five-paragraph narrative of the explosion that was not true. In fact, Maley was not in the Middle East in 1991 and did not serve in the Gulf War, he said. Also, in the headline Maley is referred to as a veteran, which Maley now says is not true.

I didn’t read the story (and can’t now, because it’s no longer online), but this news left me sad and infuriated at the same time. Sad because the guy apparently needed and liked the attention so much he could tell that elaborate lie. Sad because really, I know enough to know he was worthy of a story without having been a veteran. Blindness is really really hard. Diabetes is really really hard. Working with guide dogs is both a blessing and an enormous responsibility. A good reporter and storyteller could find these stories and weave a compelling piece about the facts — and the story wouldn’t need embellishment.

The infuriated part comes from the insult he gave to veterans who did serve and were disabled during their service, and especially from the sloppy, irresponsible journalism that seems to be getting more commonplace. It ain’t the blogosphere I’m talking about — it’s places like the Tribune and the NY Times and of course, cable networks of all political bents.

One other emotion — disappointment. Whether it’s movies or television ads or social media, it seems that only extreme-to-the-point-of-freakishness items get our attention. Which numbs us to the true, quiet stories and accomplishments of people around us every day. It’s like we live in a big reality TV show. And we don’t value our own lives, which are pretty rich if we take the time to realize it.

Actual reality provides plenty of drama, heartbreak, inspiration, tragedy and comedy — can we just stick with that?

My friend Benita Daniels Black grew up in the Bronx, taught at public schools in Queens, and raised her son in their apartment in the Village. She loves New York City, and she planned on living there the rest of her life. But then she went to her grade school reunion.

That’s Benita with her beloved grandson Sam (photo courtesy of Josh Daniels).

Dr. Henry Black attended P.S. 114 in the Bronx (sixth-grade class of 1954) with Benita and took time off from his job as Chairman of the Department of Preventive Medicine at Rush-Presbyterian-St. Luke’s Medical Center here in Chicago to attend that grade school reunion, too. The New York Times published a very sweet story about the epistolary romance that ensued after that. “Within a few weeks, they’d amassed 1,200 e-mail messages,” the story said, quoting Benita saying how exciting it was to be with someone you shared a childhood with. “So much could be shorthanded.”

Benita and Henry were married at the New York City Municipal Building on April 19, 2002. Shortly after joining Henry here in Chicago, Benita started volunteering at Blind Service Association (BSA) to read aloud to people like me.

Week after week she’d help me weed through the pile of books and magazine articles I’d lug into the BSA office on Wabash. We learned a lot about each other in a very short time — she by the things I brought to read, and I by the inflection in her voice as she read them out loud.

When we discovered we were baseball fans, and we both followed the American League, we started going to games together. Henry and Mike joined in the fray, and the four of us started going out for meals, too, mixing politics with baseball talk.

In 2006, Benita let me know that she and Henry were moving to Manhattan. I wasn’t surprised. New York City was their home, after all, and I was just grateful for the serendipity that connected the two of us during her time in Chicago.

We’ve visited each other a few times since, and we keep up with each other via phone and email. When Benita emailed me a few months ago recommending the audio version of Supreme Court Justice Sonia Sotomayor’s memoir My Beloved World, I took note. Benita and Justice Sotomayor both grew up in the Bronx, and I am guessing some of the talented students Benita taught at public schools in Queens reminded her of young Sonia. In her email, Benita pointed out that the Supreme Court Justice and I both grew up with hardworking single moms (Sonia’s father died when she was young, just like me) and that I’d be able to relate to Sonia’s stories about learning to give herself insulin injections when she was in second grade (Sonia and I were both diagnosed with Type 1 diabetes as children).

But could Sonia Sotomayor write well? If Benita was recommending the book, I figured the answer had to be yes. I just finished reading the memoir, and I figured right. It’s a great read, and it’s well read, too: Rita Moreno is the narrator. Yes, that Rita Moreno. Anita from “West Side Story.” She’s friends with Sonia Sotomayor, and hey, I suppose when a Supreme Court Justice asks you to read, you do it!

You can tell that these two women know each other well by the way Moreno intuits which word to punch, where to pause and which phrases her friend would have said with a laugh. As a reader, the Academy award-winner is second only to Benita Daniels Black. And in a wonderful, wacky 21st century way, Benita still acts as my reader, sending links to New York Times stories she knows I’ll be interested in, and recommending books and authors she’s sure I’ll like.

If only the robotic drone of my talking computer would read with a New YorkYawk accent.

An organization called Art Beyond Sight is working with the Chicago History Museum to learn more about ways people who are blind manage in museums, and I’ve been invited to head over there this Thursday morning to offer suggestions.

Confession: I’m always ambivalent about these things. I credit the institutions for trying. I really do. And some special accommodations–like the advance tour before plays at Steppenwolf — truly enriched my experience. But when it comes to static, visual art, I must confess I’ve been to several accessible exhibits and none have been particularly satisfying or enlightening.

Mind you, I’m not speaking for all visually impaired people. And I’m never one to turn down special privileges, like the ability to touch artifacts that the general public cannot. But for me, touching artifacts does not allow me to appreciate the entire exhibition. It only provides some of the pieces, and hey, I already spend too much time putting mental puzzles together every day.

As for audio tours, well, they can be quite entertaining and educational, yes, but paying to get into a museum just to walk around with headphones on doesn’t make sense to me. I’d rather download the monologue and listen to it at home, lying comfortably on my couch!

I do like living in a big city with lots of museums. I get a lot out of it without being able to see. I attend lectures and read books to learn about exhibitions in town, about the artists and their lives and their significance. I enjoy discussing the exhibitions with sighted friends who go see them, but as for the special tactile things, I confess that they:

• Expect too much. Touch is too particular — I can only take in parts of the artwork that are one fingertip wide
• Make the sighted people feel better about the Braille signs and tactile exhibits than I do
• Leave me feeling obligated to be grateful

But, again–I applaud the effort, and because I’ve been wrong more than once in the past, I figure they asked, so I’ll answer. And in the process, I’ll be forced to climb back on the horse, er, bus…One of the many, many things I’ve had to avoid since my unexpected emergency open-heart surgery is riding a bus alone with my Seeing eye dog. Surgeons were afraid the bus would take off before we found a seat and I’d fall. Not good for my healing sternum.

This Thursday marks 12 weeks since my April miracle. My sternum is healed now, and the #22 bus is an easy ride from our place to the Chicago History Museum. I’d be lying if I said I wasn’t a bit anxious about the bus trip, and a post my writer friend Jeff Flodin just published called Every trip an adventure is not boosting my confidence, either (it’s about trying to find a seat on CTA buses with his Seeing Eye dog Randy). And so, rather than think about bus rides and well-meaning accessible exhibits, I’m focusing on my reward instead: I’m meeting friends at the museum afterwards for lunch. No special accomodations necessary for that: my four remaining senses are enough to feel the air-conditioning, smell the coffee, taste the food and hear lively conversation.