Back in 2002, after he turned 16, our son Gus moved to a residence for developmentally disabled people operated by Bethesda Lutheran Communities. I have a pretty good list of “most difficult times in my life,” as we all do if we live long enough. That time is unsurpassed.

Gus was game for a hug–after he finished his Whoppers. With cheese.

But it was made substantially less difficult by the wonderful human beings we like to call staff, or caregivers, or care providers or some other clinical term. I’ll just leave it at wonderful human beings (WHBs). They communicated with us regularly during the transition, sought and found ways to make Gus feel at home, and eventually, he did. And eventually, we could visit Gus, and not cry our eyes out on the 2-1/2 hour drive home.

Then he had to move again. He had lived in a dormitory style building, which was brand new when he moved there—but the movement toward group homes in community settings had become the flavor of the day. And so, Gus moved with three other fellows into a nice little ranch home across from a nice little park. And we held our breath that it would go OK. It did.

You know why? Those WHBs.

Last week Beth and I met Gus and one of those WHBs at a doctor’s office near where Gus lives. Gus has been having some behavioral issues—nothing we hadn’t seen before, but troublesome because they hadn’t manifested in a long time. And so we and the WHB were seeing a doctor about it.

After the appointment, we met Gus and the WHB at Burger King, where he was treated to two whoppers with cheese and French fries. We took the opportunity to chat with the WHB, learned about how and why she worked with folks like Gus, and generally had a swell time while Gus plowed through his lunch.

A month earlier, I’d attended a meeting of parents and guardians of people who are served by Bethesda. Times are hard—they’re facing cuts and budget issues like everyone.

Beth’s mom Flo got to visit with Gus and us at his little house a few years back–she was 93 at the time.

Here in Illinois, the inane budget standoff between people who are perfectly comfortable regardless of how stupid they are, has already taken a toll on everything from literacy programs to health care. Staff are out of work and their clients—who were already out of luck—are just out. On their own.

We’ve got something wrong right now. Really wrong. Forget ideology. Just ask yourself: Is there enough money in this country to pay people who care for people like Gus, or people like Beth’s mom at the end of her life, or people like us when we get there, what they’re worth?

On one hand, I’d say no, because what they do is priceless. But we can pay them more. And we can. And that we don’t is on all of us.

As we chatted with the WHB at Burger King, she thanked us profusely for attending the meetings. “When it’s just staff, the doctors don’t take us seriously,” she said.

Having not been taken seriously by a doctor or two in our time, we completely empathized.

And before we left, we were sure to say, “No. Thank you.”

It’s been a very happy week here in Chicago. Ours started last Friday, when Mike and I took an el to Schaller’s Pump on the South Side to watch a playoff game. Schaller’s Pump has been at 37th and Halsted since 1876, and from Mike’s description it hasn’t changed much since then.

The bar is cash-only, the bartender was our age or older, and when she recommended the ribeye sandwich we didn’t bother looking at the menu. She served it with a cup of bean soup and a draft beer. I felt like I was a world – and a lifetime – away, a college girl on a date with Mike.

The whole class celebrated Wanda’s (on my right) 94th. Photo courtesy Darlene Schweitzer.

The next morning my Seeing Eye dog and I walked over to the Chicago Architecture Foundation for Must-Hear,a special 25th anniversary walking tour they put together for adults who are visually impaired or blind. Whitney and I headed directly from the tour to Chicago’s Goodman Theatre for their first-ever audio touch tour in honor of, you guessed it: the 25th anniversary of the ADA. The actors from the play Disgraced got on stage to describe their characters, their clothing and their hair styles to us before the play. Minutes later my friend Brad and I were blown away by their fantastic performances on stage. The week went on from there:

• Monday my Lincoln Park Village Memoir II class started a new eight-week session, and that night Mike, Whitney and I took an Amtrak train to Milwaukee, where we enjoyed cheese curds and Miller beer at our hotel bar.
• Tuesday Mike rented a zipcar in Milwaukee so we could visit our son Gus in Watertown, Wisconsin.
• Back home Wednesday the “Me, Myself and I” class I lead in the Chicago Cultural Center celebrated writer Wanda Bridgeforth’s 94th birthday, and her fellow 94-year-old writer Hanna Bratman arranged for a ride from the assisted living center she’s living in to be there for the party, too.
• By Thursday I’d flown to St. Paul, Minnesota to speak at Metropolitan State University (a disability studies class there uses my memoir Long Time, No See as a text book), and I enjoyed dinner that night with my great-niece Shelley Rae, a stylist known for her skills with coloring hair. Shelley regularly travels to NYC and L.A. to teach hair-coloring classes but had spent most of her Thursday afternoon at her salon in Minneapolis doing a client’s hair in a “rainbow sort of swirl thing.”
• This morning I woke up in my St. Paul hotel room and had the staff take care of Whitney while I swam laps – the hotel adjoins the oo la la St. Paul Athletic Club – before taking a cab to the Minneapolis airport for my flight home.

You know, one of my favorite reviews of my children’s book was one from Booklist editor Donna Seaman, who pointed out how Safe & Sound not only shows young readers how remarkable Seeing Eye Dogs are, “but also how a person without sight can live a full, creative, and pleasurable life.” Amen! And now, for a day of rest.

It’s Wanda Bridgeforth’s 94th birthday, and without telling Wanda, I asked her fellow writers in the Wednesday “Me, Myself and I” to surprise her with essays on “What I Learn from Wanda’s Wise Words” and read them aloud to her this morning. Here’s mine.

Bee-you-tee-full

This is what our street looked like on the night of the 2011 blizzard. (Photo courtesy Lora Delestowicz-Wierzbowski.)

Wanda Bridgeforth has taught me the meaning of beauty. More specifically, the meaning of the word “Bee-you-tee-full.”

Nearly five years ago the Chicago Cultural Center had to cancel our “Me, Myself and I” memoir- writing class due to a blizzard. I dialed Wanda’s number that day to see if she was weathering the storm. When she heard my voice on the phone, she excused herself to turn down the radio. “I’m tired of hearing all those people calling in anyway,” she said. “All they’re doing is complaining about their long waits for the bus or the train, or the way the city didn’t shovel their street.”

Wanda will be 94 years old this month, and she is not a complainer. She credits her own upbeat attitude to her hardworking mother and her beloved uncle, Hallie B. “Hallie B. always told me that people who sit and mope with their head in their hands, well, they never see the good things coming their way.”

On that phone call in 2011, I asked Wanda to describe the storm that everyone around me was complaining about. She started out by using her favorite four-syllable word. “Bee-you-tee-full.”

That’s Wanda from way back on her 90th. Photo courtesy Darlene Schweitzer.

Wanda has lived in more than 50 different apartments or houses in her lifetime. Her mother was a “domestic” and had to leave Wanda every Sunday to take off and live at the houses she took care of. Wanda lived with one relative one week, a friend the next, and sometimes, with complete strangers. “I tell you, Beth” she said to me once. “I could share stories with you about growing up that would make the hair curl on a bald man’s head.”

These days Wanda lives alone, perched in a small apartment in a South Side Chicago high-rise that overlooks Lake Michigan. She writes her essays for class while sipping on coffee, looking out her kitchen window and watching the birds and boats on the lake. “There was absolutely no horizon during the storm,” she told me during that blizzard in 2011. The sky was white, the ground was white, the lake was white. “Like someone had draped a fuzzy white blanket over my window.”

Wanda woke up at 3 a.m. the night of the storm and sat staring out of her window for hours. She’d never seen anything like it. It was stunning. “I drank coffee until I was drunk!” she laughed. “It was bee-you-tee-full!”

Happy 94th, my friend. Without you, I might be tempted to look at my own days as stormy, but having you in our memoir-writing class (and, more importantly, calling you a friend) makes my life bee-you-tee-full.

Wanda’s classmate Sharon Kramer compiles essays by writers in the “Me, Myself and I” class on the Beth’s Class blog. Look for essays by — and about –Wanda there.

Remember the last mass shooting? It’s been a whole 10 days, which is seeming like a long time between such tragedies. (In fact, FBI stats put the average length between mass shootings, defined as resulting in four or more deaths, at two weeks.)

After each one, this Onion headline always springs to mind: No Way To Prevent This,’ Says Only Nation Where This Regularly Happens.

It does seem insane that we seem unable to change anything as these incidents pile up. I don’t have a lot original to say except that I support more public safety measures such as background checks for every fire arm sale, every where. I can’t promise it’ll stop things, but I believe it would help cut the number. And it would be worth trying, and worth the minor inconvenience.

But I also don’t think it’s just about guns. Even Michael Moore, who strongly supports stricter gun laws, acknowledged this in Bowling for Columbine. Canadians, as that film points out, love their guns, and they have a lot of them. But we don’t see the craziness from the Canucks. Clearly, there’s something different about the United States, and it isn’t a good different.

I read two or three things this past week that I found constructive and that connect our societal failures—and individual failures—to these horrible events.

One of them is by a blogger named Mark Manson. I can’t vouch for him overall, don’t know much about him, but I thought his thoughts here are worth everyone taking to heart. He suggests that in the predictable aftermath of each incident, we miss something: An excerpt:

And while we’re all fighting over whose pet cause is more right and more true and more noble, there’s likely another young man out there, maybe suicidally depressed, maybe paranoid and delusional, maybe a psychopath, and he’s researching guns and bombs and mapping out schools and recording videos and thinking every day about the anger and hate he feels for this world.

And no one is paying attention to him.

He notes that these onerous school slaughters—Virginia Tech, Sandy Hook, and on and on…they’re not impulsive outbursts. They’re well planned, often for months or more. The killers are methodical in their preparation. They’re alienated and very unhappy. They want to make a very big splash on their way out. And the killers almost always give off plenty of red flags well in advance.

That’s the Cliff’s Notes—the full piece is worth the read.

The other thing I read comes also from someone I know almost nothing about—a musician named Jonathan Byrd. He grew up using guns, travels a lot in other countries and has some pretty keen observations about what’s different between them and us. A snippet:

More interesting to this essay are other countries I’ve been to regularly: The Netherlands, Germany, Denmark, and Switzerland. Canada is notably similar in that there are a lot of guns, but not much gun violence compared to the U.S. Almost every grown man in Switzerland has an assault rifle issued by the military. They have gun festivals with shooting competitions for the kids.

All these countries also take care of their citizens.

The pieces differ substantially in their approach, but there is an intersection: How we treat one another here in the United States (pretty poorly) is at least a part of the problem. The Byrd piece happened to be a Facebook post that someone shared—about the most thoughtful thing I’ve ever seen on Facebook.

Anyway, you can read it here—and I hope you will.

Four more days and we’ll hit that two week mark.

The Cubs win over the Pittsburgh Pirates last night means they’ll be in Chicago Monday to play the St. Louis Cardinals, but a fan who uses a wheelchair says she isn’t going to bother trying to see the game at Wrigley Field – it’s inaccessible for her.

A jumbotron in left field was part of renovations at Wrigley.

Lifelong Cubs fan Marla Donato started using a wheelchair two years ago after undergoing multiple surgeries to repair a shattered leg and ankle. “Even if the Cubs’ season continues, I won’t be angling to go to more games,” Donato writes in a post on the CityLab blog called I Love Wrigley Field, But as a Wheelchair User, I Sure Wish It Was Easier to Navigate. “It’s too hard to navigate the ballpark in a wheelchair.”

In her post, Donato said she’s been root, root, rooting for the Cubbies at Wrigley Field her entire life, and she figured it’d be no big deal going there in a wheelchair. “After all, this year marks the 25th anniversary of the Americans with Disabilities Act,” she reasoned. “We’ve come a long way with accessibility issues.”

Here at the Safe & Sound blog I’ve been publishing a lot of posts lately about the 25th anniversary of the Americans with Disabilities Act. Saturday morning I’m taking a special tour of downtown Chicago for people who are blind that the Chicago Architecture Foundation put together to celebrate the anniversary, and I’ll head right from there to the first-ever touch tour put on by the Goodman Theatre — I’ll see (well, I’ll hear!) the production of Disgraced after I tour the stage. We’ve come a long way in terms of accessibility, but 25 years later, many public spaces remain inaccessible or inhospitable to people with disabilities.

In her post, Donato wrote about the $575 million budget Cub owners have to update Cubs Park and the surrounding area — she assumed upgrading accessibility would be high on their to-do list. “But instead of, say, getting the elevators running by even halfway through the season, the ballpark’s brass concentrated on installing big Jumbotrons and an ear-splitting audio system by opening day.”

The game Donato attended at Wrigley over the summer was her first “fun” outing after doctors had to re-break her heel during a recent surgery. Some of the challenging issues she encountered during that fun day:

• Inaccessible bathrooms. She couldn’t brace herself to stand up on her own in a stall, so a stranger helped pull her pants up and down.
• Elevators out of service. A spokesperson for the U.S. Department of Justice (which oversees compliance with the Americans with Disabilities act) pointed her towards regulations that stipulate that elevator repairs “must be made as quickly as possible.” The regulations do not specify how quick “quickly” has to be, and they say ramps are okay in the meantime.
• Ramps are steep. Some “historic properties” are held to different standards when it comes to things like the steepness of ramps. Donato’s husband and a “young, strong usher” struggled together and finally managed to push her up the long series of steep ramps at Wrigley.

Once in their assigned area, Donato’s wheelchair was placed along with others behind the last row of seats at the very top of the Terrace. “Were we all actually expected to sit completely in the main aisle and become an obstacle course for drunken fans on hotdog and beer runs?” she asks in her blog post. “Wasn’t that a fire code hazard? An emergency exit violation?”

Cubs spokesman Julian Green told Donato later that her assigned seating was perfectly legal, that sitting completely out in a main aisle without any protective barrier satisfies ADA regulations as long as the aisle is considered wide enough.

Donato’s post goes on to spell out countless other problems she encountered at the game this past summer, and how she learned that when it comes to making accommodations for people with mobility impairments there are a lot of gray areas — even after the passage of the Americans with disabilities Act. From her post:

It tends to be easier to get around newer parks, built after 1993, which are held to different standards. And there are some allowances for “alternative standards,” such as the steepness of ramps for “historic properties.” Those are ones “eligible for listing in the National Register or Historic Places, or properties designated as historic under State or local law.”

If any of you blog readers know how Fenway Park in Boston dealt with these sorts of issues, or if you have stadium stories of your own to tell, please leave them here in the comments.

In the end, Donato and her husband left the game early – they wanted to avoid navigating her wheelchair through the crush of fellow Cub fans on the steep ramps towards the exits. “We missed the Cubs’ ninth inning fall from grace and then the team’s tenth inning game-winning home run,” she writes. “Now I’ve added stadiums to my list of fun things I took for granted before I had to navigate them this way.”