We were back in Wisconsin again this past Saturday, this time to visit our son Gus, and for me, to attend a meeting of the Bethesda Parent Guardian League. The League is exactly as its name implies — parents and guardians of developmentally disabled people served by Bethesda Lutheran Communities. I’ve been on the board of the League for about 10 years now.

The League’s members meet regularly to get updates from Bethesda Staff and present our concerns about how our people our doing. Maybe most important: we get to share company with people who know. Know what it’s like to have children and siblings and loved ones who have developmental –and typically also physical — disabilities. We don’t have to explain fundamental things to one another. We can look into each others’ eyes sometimes and just nod. It’s kind of priceless.

For the past 10 years or so, Bethesda has been negotiating and navigating the community placement movement. In short, there has been a national effort toward downsizing and eliminating large, standalone institutions in favor of group homes in community settings. Bethesda’s campus once was the home for hundreds of residents. I can’t recall precisely how many were living there when Gus moved there in 2002, but I think it was around 175. It’s been shrinking — by state mandate — ever since.

Gus moved into his little home with three other guys only a couple years after he moved to Bethesda. When Bethesda staff first presented us with what was then an option to move from the main campus — where he lived in the equivalent of a small dormitory in his own room — we were deeply conflicted. He’d settled in well on campus and we cringed at his having to make another big transition. But it appeared to us to be inevitable, and this was a pretty ideal situation, so we went forward. Gus has done extremely well — for that, and especially for the folks who care for him, we are immeasurably grateful.

Bobby Ladwig — a former staff member at Gus’ house — took Gus and other residents to the local carnival last year. That’s Bobby’s son on the left.

Right now, the few residents remaining at the building on campus are there largely because they have more demanding medical issues than others like Gus. Their parents and guardians have been reluctant to make the change, something those of us — even we who have seen the group home option work for a wide variety of people — completely understand. But because of state mandate, it is no longer a choice. The campus has to be empty by next year, everyone needs to be in community placements, and Bethesda has been furiously acquiring lots, building homes, or finding alternate placements with other providers.

On one hand, everyone in the Parent Guardian League feels and expresses gratitude for having the likes of Bethesda on the case. On the other, there’s frustration and fear –some of the folks who are moving have been there for decades. It’s all very stressful. So these meetings aren’t always rosy-even if they’re always, in the end, therapeutic and constructive.

A running source of stress in providing care for people with developmental disabilities is staff turnover. It’s a hard job, there’s burnout, and the pay stinks. And that was a topic of discussion Saturday. Bethesda staff outlined an ambitious new program to recruit and retain direct service professionals (DSPs). That was the good news. The bad news concerns pretty much all of us, not just those of us who worry about our developmentally disabled loved ones. Bethesda is facing what the nation is facing: An acute shortage of the folks who do the difficult, admirable, invaluable-yet-undervalued work of providing direct personal care. This NY Times blog reports that right now there are 1.3 million people on the front lines, coming to homes to help people stay in their homes, staffing places like the one where Gus lives. And according to some, we’ll need 5 million by 2020.

No one knows where they’re going to come from. Right now, they tend to be less-educated, and are disproportionately from minority and immigrant population. Lots of the funding for these people come from Medicare and Medicaid, programs under their own stress. I don’t know the specific answer to filling these jobs, but it does seem the fundamental problem is our collective values and how they’re playing out in our economics. My take is the likes of gazillions-earning Jamie Dimon of J.P. Morgan Chase could disappear tomorrow with little consequence. There’s a parade of operators behind him. Same for hedge fund managers, private equity moguls and other masters of the universe. Not so for any of the people I’ve seen care for Gus at Bethesda, for my sister during her final days in hospice care, Beth’s mom in her last weeks.

I’m not saying the financial wizards don’t provide value. I’m just saying we overvalue their contribution — by my reckoning, anyway — and we undervalue the care givers. (And a lot of other folks, but that’s another story.) By my way of thinking, this is a gigantic market distortion, and something is wrong. Not sure how to fix it. But it’s worth bearing in mind, I think, in national discussions about the health care system, Medicare, Medicaid, and even immigration.

No one gets out of this place without needing caregivers for themselves or their loved ones. So I would hope that no matter our differences in ideology, most people agree that these caregivers deserve our praise and admiration and gratitude — and a whole lot more than a fast-food wage that often comes with no benefits. I think we’re going to have to make sure that happens, for all of our sakes.

I have a children’s book published, but here’s a confession: I don’t know a whole lot about children’s literature. Not modern children’s literature, at least. I read a ton of books when I was little, but after I traded my children’s library card for one that got me into the adult section of the Elmhurst Public Library, I never looked back.

This means that when the Sheboygan Children’s Book Festival started touting the writers who’d be there last weekend, I didn’t recognize a single name. I just figured everyone on the list was like me: Midwesterners willing to travel to this out-of-the-way Wisconsin town to sell a few books and enjoy the quiet.

The organizers created trading cards for all the authors, including moi! The front’s above, back below

Boy, was I wrong.

The Sheboygan Children’s Book Festival is spearheaded by two retired children’s book librarians who volunteer their time to the festival, and every year these two dynamos manage to bring a few very highly-regarded children’s books and authors to small-town kids in Wisconsin. Here’s a sampling of just four of the 16 writers at the festival last weekend:

• Kevin Henkes won a Caldecott Medal for Kitten’s First Full Moon and Newberry honors for two of his novels, Olive’s Ocean and The Year of Billy Miller
• Blue Baliett wrote Chasing Vermeer and other mysteries for children that regularly appear on the New York Times best-seller’s list
• Peter Brown won a Caldecott Medal for Creepy Carrots, and he came from Brooklyn to be at the festival
• Raina Telgemeier traveled from Astoria, New York to be at the Sheboygan festival, and she has a graphic memoir called Smile that was named a New York Times Book Review Editors’ Choice.

So was I intimidated by all these famous writers? Heck no. I was impressed! Both with the fair organizers who got these writers to come, and the writers who took planes, trains and automobiles to get to Sheboygan.

And besides, who needs the New York Times or some fancy-schmancy medal? I’ve got a secret weapon: Whitney.

A volunteer driver chauffeured Whitney and me to visit small-town schools as part of the festival Friday, and at one school a starstruck boy approached to shake my hand. “You’re the first blind person I’ve ever met,” he said. When I took Whitney’s harness off at another school to let kids pet her, one girl crawled up on all fours. “I’m a Seeing Eye dog,” she said. Her friend was right behind, closing her eyes and grasping a belt loop for guidance.

Our presentation the next morning was in a section of Bookworm Gardens dedicated to Helen Keller. the flowers and plants feel — and smell — sensational there. A six-year-old with visual impairments came to hear me speak, along with her brother and her parents. Maya is learning Braille at school, and she came up to the front to help me answer questions from the audience afterwards.

My favorite question from the entire festival came later. I sat on a panel about “Animal BFFs” and a woman in the audience wondered if losing my sight had heightened my sense of intuition.

“Whoa, I’ve never been asked that before!” I said, taking time to ponder. Do I? Sometimes I’m right about guessing which elevator will open first. Hmm. The other day I thought about Colleen, and when i got home there was a message from her on the answering machine. You think…and suddenly I realize I had my answer: no. if I’d had a good sense of intuition, I would have known she’d be asking that, and I would have been ready with a response!</p>

Elkhart Lake, Wis., has a population of 900+ by the Census Bureau’s count, but by the locals’ estimates, that balloons to 10s of thousands during big tourist weekends in the summer.

I know this because I just got back from Elkhart Lake. I accompanied Beth, who had multiple gigs at the Sheboygan Children’s Book Festival, which she’s likely to report on later this week.

Meantime, I was reminded that despite all the homogenizing forces in modern life—mass media, chain stores, interstate highways and drive-thrus, distinct local culture continues to withstand all those forces.

From those looong Northern Plains oooooooooohs made famous (and exaggerated) in the movie Fargo, to drink specials at local joints offering $3.00 Old Fashioneds (do you want brandy or whiskey, sweet or sour?), to the Friday night fish fry featuring fresh Blue Gill, we knew we weren’t in Printers Row anymore. And it was glorious.

We stayed at a really big resort called the Osthoff, which is a nice place, but like all the best of Wisconsin, not so nice that you would ever feel uncomfortable or unwelcome. It sits next to the water, and the famous Road America race track is less than a mile away. Saturday and Sunday mornings brought the muffled distant roar of sports cars screaming around the four-mile circuit, but even that wasn’t really unpleasant, as it didn’t last, and it beat hell out of the sound of garbage trucks in the morning, which is our neighborhood’s version of the rooster.

The trees, according to the local newspaper, were at peak autumn color. I certainly wont argue. Speaking of the paper, it was delivered outside our door each morning. It’s a Gannett paper, but not the USA today. No, the Sheboygan Press. And I was happy to see that local print journalism is healthy and alive. And any question I had about Sheboygan, Elkhart Lake, and the Kettle Moraine area losing their identities was set straight when I read the round-up of coming events. It included:

Read it for yourself–Sheboygan!

• A fundraising dinner put on by an animal welfare agency to benefit its Trap, Neuter, Return program—which is pretty much what it sounds like: a way of managing feral cats. Featured: a Spay-ghetti and No-balls dinner.
• Juxtaposed in the next column, a Norwegian Lutefisk dinner, presented by the Sons of Norway Vennskap Lodge #5-622. This one promised meatballs—Norwegian ones, among other Norse delicacies.

And one other thing regarding cuisine: around Chicago menus often include “Sheboygan” style bratwurst. As far as I can tell, Sheboygan has meant a course grind, and not the whitish, veal based kind of bratwurst. And I assumed it was the pride an joy of, well, Sheboygan.

Well, Beth was chauffeured around by a volunteer and she kept asking about where to get a good Sheboygan brat. Finally, the volunteer, a great guy who was fearful of sounding rude, told her that they didn’t know of anything called Sheboygan style bratwurst. They just knew bratwurst. Served on a really good roll. They finally stopped for one between gigs, and Beth brought hers home to share.

Whatever it’s called, it was really, really, really good.

On Wisconsin!

It’s “Disability Awareness Week” at Wilmot Elementary School in Deerfield, Illinois, and the kids there had already enjoyed a special guest before I showed up there with Whitney yesterday. Melissa Stockwell, a three-time Paratriathlon World Champion and decorated U.S. Army veteran, had been at Wilmot the day before us.

Melissa was serving in Baghdad in 2004 when a roadside bomb hit the HUMVEE she was traveling in, resulting in the amputation of her left leg above the knee. She was the first female to lose a limb in active combat, and four years later, she was the first Iraqi War veteran to qualify for the Paralympics: she represented the United States on the swim team.

After Beijing, Melissa took to triathlons. She is currently a three-time World Champion, and When she isn’t running, swimming or bicycling, she works as a certified
prosthetist at Scheck and Siress Prosthetics in Chicago, fitting people who have had amputations with artificial limbs.

Whit’s always up for a class visit.

When my talks at Wilmot were over yesterday, I took Whitney’s harness off and let any of the interested kids come by and pet her. As Whitney flipped over and over again
for belly rubs, one of the school volunteers there told me that after the presentation the day before, Melissa Stockwell had the kids come up and touch the prosthetics she works with.

“Wow! I want to go to this school!” I exclaimed to the gaggle of kids petting Whitney. “I know,” one of them said.

“We’re lucky.”

Budweiser’s been running a very popular commercial against drunk driving that takes a novel approach: Be careful, be responsible, and get home safe…to your dog, who’s counting on you, after all. It’s really effective, all the more if you have a dog thing. You can watch here if you haven’t seen it.

The effectiveness of the dog angle in that little ad reminded me of a David Sedaris story called April and Paris. It opens with a bit of advice for anyone raising funds in the wake of disasters like Hurricane Katrina: Show animals in distress, not people—you’ll get a lot more donations that way. You can read April and Paris here, and it’s well worth the time, like pretty much anything Sedaris does.

Back to drunk driving, I’ve always had an offbeat opinion on the subject. It goes like this: I don’t care why someone does something stupid in a car that results in accident, injury or worse. Driving is serious business, and stupid is stupid. If a driver is perfectly sober and blows a light or changes lanes abruptly without signaling and hurts or kills another person, I don’t care why they did it—but it should carry consequences, whether or not the driver is drunk.

Driving drunk is bad because we know it increases your chances of driving poorly and endangering yourself and other people. But it’s the driving poorly part that is the issue. If you’re guiding a two ton missile and you’re texting or listening to angry hateful radio or you’re thinking about something other than driving safely, you’re as dangerous as a drunk driver. Because it’s an enormous responsibility, not an entertainment and it’s not a right.

This opinion is informed by having ridden a motorcycle on public streets for decades. I always realized it was risky, and to reduce the risk I wore protective gear, and practiced what I learned in multiple riding school sessions. On a bike, you learn to expect the absolute worst behavior from drivers, and the drivers consistently deliver. And when it’s your life, you tend to treat a driver’s failure to yield as a federal offense.

As a pedestrian commuter in a busy city I witness horrible, irresponsible driving, every single day. (And that includes some bicyclists who give bicyclists a bad name.) And off course, Beth’s written about her near misses in traffic here in the past.

I’m not saying that drunk driving is OK. The cultural and legal shift to preventing was absolutely necessary and it’s done a lot of good. I don’t think we should lock people up for failing to use their turn signals (though, sometimes…). We’ve got too many people in jail as it is. I’d just like something of a cultural change that recognizes that driving is serious business. And that enforcement of existing traffic laws (not just speeding) were better enforced, and that penalties for any kind of bad driving were stiffer.

It’s touchy, because we’ve all done stupid things in a car and I think we cringe at the thought that what we consider an honest mistake would be compounded by losing our license or worse. That puts me in a minority about this hawkishness on sober bad driving, and I have learned to mostly keep it to myself. But I began thinking of it again when I read a heartbreaking op-ed called Why Drivers Get Away with Murder by the mother of a 9-year old who was killed by a driver who didn’t see the boy—who was holding his father’s hand as the pair walked across a New York Street (in the crosswalk).

She makes her own argument, and I hope you’ll read it–as well as the comments, many of which are pretty thought provoking. There might be a tendency to dismiss her thoughts as natural, and overwrought, in the wake of a tragic loss. I think the tragedy simply awakened her to the kind of crazy risks lots of us take, every day, that we’ve somehow numbed ourselves to.

So let’s be careful out there, okay?