Maine so far

July 8, 201713 CommentsPosted in book tour, careers/jobs for people who are blind, memoir writing, Mike Knezovich, politics, radio, Seeing Eye dogs, travel, Whitney, writing

Hello from our little inn in Lubec, Maine. We won’t be heading across the river to the Iota: The Conference of Short Prose at Roosevelt Campobello International Park until later this morning, but in the short 24 hours we’ve been here I already have a lot to write about.

Picture of Whitney lying at Beth's feet on the plane.

Whitney got to lay across the row instead of scrunching under one seat.

A worker at our gate at O’Hare was so taken by my Seeing Eye dog that she gave me and Whitney our own two seats. “That way she can stretch out.”

At the Bangor Airport in Maine a Budget Rental Car worker upgraded us to an SUV. “That’ll be nice for the dog.” It was nice for us, too.

With my window down I could take in the clean air and breathe in the fragrance of pine trees. A world away from far-away Chicago. The familiar songs on the car radio reminded us we were still in America, though — we sang along to Steely Dan’s “Reeling in the Years” and Little Feat’s “Dixie Chicken.”

Sign outside trailer that sold lobster rolls (among many other things).

Sign outside trailer that sold lobster rolls (among many other things).

When Mike caught sight of a roadside trailer selling lobster rolls en route from Bangor to Lubec, we stopped for lunch.It was there we caught the first sound of that Maine accent.”Does yah dahg wahn ice cream? Free fah ahl dahgs” Whitney ate it up

And when Mike read this description of a Trump Sandwich they were offering, we felt among friends.

Trump Sandwich sign that says white bread, baloney, Russian dressing and a small pickle

Every week is a history lesson

July 4, 20178 CommentsPosted in careers/jobs for people who are blind, guest blog, memoir writing, politics

Two of the “What My Parents Believed” essays read out loud at our Printers Row memoir class last week seemed perfect for a Fourth of July post, and writers Robert and Maggy generously agreed to let me share excerpts from each of their essays here. Three cheers for life, liberty and the pursuit of happiness.

A disinterested Robert and his parents, Morris and Dorothy, on the dunes of Lake Michigan.

Robert’s essay opened by introducing his grandfathers. Both were named David. One was from a family of woodcarvers In Odessa, the other from a family of tailors and weavers in Kiev. ”Both Davids believed the legends of streets paved with gold in America,” Robert wrote. “And both risked what little they had to embark on a tortuous one-way ‘third class’ journey by land and sea to the land of freedom and opportunity.”

Each David arrived in Chicago around 1905, only to discover the pavement here isn’t made of gold after all. “In fact, the roads were covered with horse droppings about the same color as the cart tracks back home.” Hart, Schaffner and Marks hired David the tailor from Kiev to sew pockets into overcoats. David the woodturner from Odessa started selling furniture from a horse-drawn cart, then opened a furniture store on Chicago’s South Side.

Another class member, Maggy, opened her essay describing her parents’ families as solid members of Haiti’s middle class – teachers, lawyers, shopkeepers. “In Haitian society back then, your last name immediately signaled your history, your social status, and, for many people, your destiny.”

After becoming exiles in the United States, it was difficult for her parents to give up their belief in a social order that determined one’s standing in life. “Back in Haiti, only well-educated people could earn good money and respect from others in society. They shook their heads to think that our unlettered neighbors in America –the cook next door and the truck driver down the street – were making a decent living.”

Maggy’s mother eventually came to appreciate living in a society free from many of the restrictions that Haitian society applied to people, especially women. “Despite the high cost of living and the cold weather, she loved the freedom to create her own life, to meet different people, and to give her children a future that was unavailable back home.”

Robert’s parents met in Chicago in the 1920s, and, as he puts it, “the Great Depression greeted my arrival.” As the American economy recovered, Grandfather David (the one with the furniture store) bought the newly built 100 room Paradise Arms Hotel on Chicago’s Washington Boulevard. “The property prospered, but in the financial turmoil of 1932, two unfortunate men turned gunmen walked into the hotel, demanded all the money, and then killed him.”

One of Bob’s uncles eventually took over the hotel, and the family stayed involved in real estate. “My parents believed in the American dream. He would work hard in construction. She would work too. Their children would go to college.”

Maggy’s father had been a lawyer in Haiti, but since his training had been based on French civil code law, he couldn’t practice in the United States. After settling in New York City, he became a bookkeeper. Her mother was a schoolteacher in Haiti. She found work in factories and eventually learned enough English to become an X-Ray technician.

“Like most immigrants, my parents believed in hard work, and adapted to the twists life threw at them,” Maggy wrote. Robert agreed. “As the depression wound down, my dad started a remodeling business and then added a lumber yard that he ran for 35 years…the streets brightened with a golden glow.”

As for Maggy’s father in New York City, having escaped the brutal Duvalier dictatorship, he admired the American system of democracy. “Every 4th of July he would read the Declaration of Independence printed in the New York Times, and make us kids read it too,” Maggie wrote. “My parents believed that America was the greatest country on earth.”

Above all, Maggy’s father believed in his daughter when it really mattered. Maggy was 25 years old and working in advertising when she decided to sublet a co-worker’s Manhattan apartment. “As expected, my mother forbade me to move out of the house,” Maggy wrote. “No respectable unmarried woman lived by herself. What did I want to do by myself that I couldn’t do at home?”

As her mother carried on, Maggy climbed the stairs to see her father in his attic office. Isolated from the din below, her father patiently listened as she explained between tears. “I wasn’t rejecting the family. I did not intend to bring shame and dishonor upon them,” she wrote. “He understood, and gave me his blessing to spread my wings and fly.”

Mondays with Mike: Mend it, don’t end it.

July 3, 20171 CommentPosted in Mike Knezovich, Mondays with Mike, politics, Uncategorized

Beth and I and Gus had close and deep encounters with the U.S. healthcare machine earlier than most of our contemporaries.  Beth and I were in our 20s when we got a birds-eye view of the Rube Goldberg mess that we call a system.

Rube Goldberg comic

Right now, it’s kinda’ like this.

We did get mostly good care most of the time. But the time spent in waiting rooms, sorting out bills that came from providers and statements provided by insurers, and calling and calling to get answers to reconcile things was a burden on an already burdened household.

We had insurance for most of the time and the worst of our health care needs, but if one bad thing had happened for the short period we didn’t, I don’t know what would have become of us. I can say this for certain: The arc of our lives would have been much different.

Even with insurance, we couldn’t always keep up with our health care bills. And so, I know exactly how it feels to bring my son to an appointment and then, while in the waiting room, get summoned to the finance office to talk about unpaid bills. And wondering whether at some point, the clinic wouldn’t see him.

I ranted, I raved, and I bored our friends and anyone who would listen. Most had been healthy enough to have avoided dancing with the system, and I came off to them as a maniacal kvetcher.

Fast forward 30 years. Health care has become a bigger issue than ever. I proselytize less. But I’ve remained an interested student of health care policy.

Here’s how I look at it: From a moral point of view, everyone should have a humane level of coverage and access for their lifetime. What’s humane? Well, I think we can sort that out if we try. But that’s where the discussion should start in my view. I don’t see it as a right, and I don’t see it as welfare. It’s a responsibility we have to one another. We can do it if we commit to it. We should.

I believe in universal access no matter how we get there. Single-payer can be fine. There are both negative and positive myths about single payer. But it’s not the only route to universal coverage—many nations have, essentially, hybrid systems.

I repeat: I don’t care how we get there; I don’t care if Republicans, Democrats, or Martians propose it. I just want an honest and intelligent and responsible discussion.

Which is why I encourage you to read a very thoughtful and detailed and informative piece in The Atlantic that my friend Dmitry shared.

It’s headlined, somewhat unfortunately in my view, How Republicans Can Fix American Health Care. Unfortunate because I think it would be better left at how WE can fix health care, but I get it, and it doesn’t diminish the article.

It’s written by David Frum, who used to write speeches for George W. Bush, and has some conservative bona fides.

Frum, by his own words, takes a “mend it don’t end it” view of the ACA. He looks at the nuts-and-bolts of the problem, most especially at the financing structure and how to make it sustainable.

To my liberal friends, don’t dismiss it out of hand. For example:

I’ve long urged a carbon tax as a way to fund health-care expansion. President Trump’s abrupt and unconsidered call for a federal Internet sales tax raises another possibility. The U.S. has entered a revolution in retailing that threatens literally millions of jobs. The continuing de facto subsidy to online shopping looks even less justifiable now than ever. Why not a federal tax set to some averaging of state sales taxes on physical stores? Such a tax would raise far more than $35 billion and would equalize the playing field between retailers in a way that helpfully slows the creative destruction of retailing jobs.

To my conservative friends, don’t expect a market-solves-all bromide.

Republican thinking on health-care cost control has been premised on the idea of “skin in the game.” The theory is that health-care costs have been driven by bad consumer choices—and could be restrained by better choices. If consumers shouldered more of the cost of medical care themselves—say, up the $6,750 per family level implied by health savings account legislation—they would think twice before calling the doctor, and maybe even generally take better care of themselves. The power of the marketplace would bring down overall costs.

Even as theory, this idea is not looking very credible. Americans do bear more and more of their own insurance costs these days. Average out-of-pocket spending on health care has risen by about 50 percent since the year 2000—faster than that for Medicare beneficiaries—even as American health outcomes have deteriorated.

I still don’t think Frum addresses cost containment head on. In Germany, the system is a hybrid of private and public options—the government is centrally involved in partnership with private insurers. Systems like Japan’s, which allow people to buy into the national system if their employer doesn’t provide insurance, still rely on the government setting price ceilings for services.

But Frum believes—as I always have—that providing insurance and access universally is at heart, good for the economy at large:

A future in which health-care anxieties trouble Americans less will be a future more open to arguments on behalf of entrepreneurship and free enterprise. Economic risk-taking will become more attractive, not less.

Like always, the politics is the bugaboo. The pursuit of ideologically pure, all-or-nothing solutions is getting us nowhere. Getting something done well will require some courage on a lot of peoples’ parts.

Including our own.




At the park — but not out of the woods — with Gus

July 2, 20177 CommentsPosted in Mike Knezovich, Mondays with Mike, parenting a child with special needs, politics, travel, Whitney

Huge thanks to all of you who read Mike’s excellent post about the potential changes to Medicaid and forwarded it on to others, commented to it on Facebook, and, especially, to those of you who contacted your legislators. Senate Majority Leader Mitch McConnell (R-KY) delayed the vote on the Better Care Reconciliation Act (BCRA) until after the July 4th recess, and with Congress taking a break now, Mike and I decided we could take one, too. We headed to Wisconsin to visit the young man you all read about in Mike’s post.

Staff at Gus’ group home had him all freshened up and ready in his wheelchair when we arrived, and our son greeted us with a mischievous laugh and a clap of his hands. A reaction to the news about the Senate delaying the vote? More likely in anticipation of the trip we were about to take.

Mike the Pied Piper pushed Gus in his wheelchair with Whitney the Seeing Eye dog and me following close behind. Our destination? The picnic table in the park across the street. Not a whole lot of kids out at the park Friday, so we were able to let Whitney off her harness for a while. She chased a ball while Mike and I talked and sang and laughed…with Gus.

So we are taking a breath this long weekend, but we know we can’t get complacent — we’re not out of the woods yet. You can check out this Medicaid fact sheet to learn more about the Senate health care bill. Then join Mike and me and tell the U.S. Senate: No Cuts, No Caps to Medicaid. Call your state senators to oppose the cuts and caps to Medicaid using this call script with additional talking points. If your Senator has already said they won’t support the bill, thank them and ask them to hold firm on their stance — this form helps you find your Senator simply by filling in your zip code.

Mondays with Mike: It’s up to us

June 26, 201712 CommentsPosted in Beth Finke, Mike Knezovich, Mondays with Mike, parenting a child with special needs, politics

Meet Gus, our son.

Our little man and his mom.

He’s 30. He laughs heartily when I sing to him in a Louis Armstrong voice. He loves music, especially stuff that has unusual rhythms—Prince is a favorite. He doesn’t seem to be able to see very well straight ahead, but he manages with his peripheral vision. And he knows Beth’s voice and my bearded face.

He can’t talk. He can kinda’ walk with assistance. And he wears diapers. He lives in a group home in Watertown, Wisconsin. It’s operated by Bethesda Lutheran Communities.

Gus was born with a genetic anomaly called trisomy 12-p. Pretty rare. The only literature we found at the time said he was unlikely to reach age 30. But he did. I’m proud of him. And of us. And of my fellow Americans who made it possible.

By the time Gus reached age 16 he was mobile and strong enough for it to be a safety issue for him and for us. We were lucky to find Bethesda. It’s a religiously affiliated non-profit. It gets donations. But it can’t do what it does without help from the broader community—like Medicaid and other programs.

Gus needs help with everything. And he gets it. From salt-of-the-earth-people who make, essentially, the minimum wage. Medicaid helps pay for that. But barely enough. Bethesda is in the midst of financial struggles, as are lots of such agencies across the country.

Gus gets medical care from providers who accept Medicaid. It’s hard finding providers in some fields—like dentistry—but overall, compared to a couple of his housemates, he’s fortunate to not need a lot of specialists’ care.

I want you to trust me on this. I’m a pretty smart person. I love my son. I’ve watched closely. No one’s getting rich off of others’ labors in this equation.

Gus is served by a Wisconsin program called Family Care, which is essentially a kind of HMO for people like him. Family Care administers Medicaid funds and pays the group home operators, and oversees the operators, and looks after Gus’ care, and communicates with us about his health and any behavioral issues. Family Care does a very good job.

Which is great—but we’re lucky to have Bethesda looking out after him because they’re on it. We always hear pronto from Sarah, who’s a lead at the home where he lives, if anything is amiss with Gus.

Beth and I have always worked. We’ve paid a lot of taxes. But even if we were totally frugal, we couldn’t cover the cost of Gus’ care. And though we’re both sort of healthy, we haven’t been able to provide that care directly for a long while now.

I’ve worked at non-profits, at government-supported institutions of higher education, at startups, and at Fortune 500 companies. I’m here to tell you, they’re all a mess. They’re a collection of humans being humanly clumsy. They all rely on enough people trying to do the right thing. If not enough of those people are in the right places at the right time trying to do the right thing, failures ensue. Government. Private sector. Doesn’t matter.

There are worthwhile discussions to be had about the devils in the details of programs like Medicaid, Medicare, etc. I’m not a rigid ideologue. Everything can work better than it does.

But we’re not having that discussion anymore.

Awhile back I wrote a post about how when bad things happen you can feel pretty alone. And about the value of understanding that you’re not.

Right now I’m feeling pretty alone. So are a boatload of other people.

I hope you’ll speak up and prove us wrong.