Medicaid is her lifeline

June 25, 20176 CommentsPosted in Blogroll, careers/jobs for people who are blind, guest blog, politics

In addition to leading weekly memoir-writing classes for older adults, I work part-time moderating a blog for Easterseals National Headquarters here in Chicago. For the past couple of weeks we’ve been publishing posts on the Easterseals blog written by people with disabilities who count on Medicaid to help them pay for everything from personal care attendants to doctor visits.

My co-worker Erin Hawley has muscular dystrophy and describes herself as a “Geeky Gimp.” She’s the digital content producer for Easterseals Thrive, a site providing mentorship for young women with disabilities. When she’s not at work, Erin watches lots of Star Trek, meets up with her board game group, obsesses over Mariah Carey, and attends pro-hockey games — all while working on a Master’s degree online from East Carolina University.

The post Erin wrote about Medicaid changes for our Easterseals blog was quoted Tuesday in an opinion piece on CNN called Medicaid Works — Let’s Keep it That Way.about proposed changes to Medicaid. I was moved by Erin’s post, and thought you Safe & Sound blog readers might be as well. Here it is:

by Erin Hawley

Erin Hawley

Erin Hawley

Almost every morning, a personal nurse gets me up and dressed so I’m ready for work. They assist me with eating, toileting, and keeping my airway open – the basic necessities of life. When I don’t have a nurse, my parents and boyfriend take over those duties, ensuring my ability to live in the community rather than a nursing home or other institution. Medicaid pays for my nurses and the medical supplies I need – paying for these out-of-pocket would cost more than my entire paycheck. And without my nurses and med supplies, I could not live how I choose to live, and how I must live. My happiness and well-being shouldn’t be contingent on whether or not I can afford healthcare.

The drastic cuts to Medicaid in the AHCA would be a disaster for anyone receiving services under the program, and low-income disabled people would be the hardest hit. In many states, Medicaid is already on a strict budget; further cutting that budget puts states in a difficult position of denying its citizens the care they need to thrive in the community. Low-income individuals already struggle to stay afloat, and losing personal care assistance, medication coverage, or access to a physician could lead to worsening health or even death. This is not hyperbole; states that rejected Medicaid expansion made their citizens suffer, possibly leading to over 7,000 deaths. Cutting Medicaid further would simply put more lives on the line. The program may not be perfect as many still don’t receive as much care as they need, but the answer is not pulling funds to an already underfunded system.

The Senate needs to make the right decision, and side with their constituents who would suffer under the AHCA. Cutting Medicaid would also endanger the programs at Easterseals that give people with disabilities the freedom to live independently, go to work, attend school, or find a community of friends. The AHCA would endanger all ages, from babies to seniors. And if you don’t think it’ll affect you, remember that you or a loved one could become disabled at any time and require the services Medicaid provides. Even if you are not directly affected by the AHCA, someone you know probably is, regardless if they speak about it publicly. We can’t prosper as individuals or as a society if a portion of its citizens are literally fighting for their lives.

I am asking that you call your senators or send them emails asking them to protect Medicaid. Easterseals has a list of resources available on how to contact your representatives, including images you can use on social media to further this cause. Let’s work together to #SaveMedicaid.

Quick! Name the only protected park in the world managed by two countries

June 23, 201711 CommentsPosted in careers/jobs for people who are blind, memoir writing, travel, writing

Two weeks from now I’ll be flying to New England to write in the surroundings of a national park in Maine. Or should I say, in Canada?

FDR slept here.

I am one of a handful of writers accepted to Iota: The Conference of Short Prose at Roosevelt Campobello International Park this year. The schedule they sent with my acceptance letter clued me in on just how international this conference location is. “All times on the schedule are in U.S. EST.,” the IOTA director wrote from the conference office in Lubec, Maine, pointing out that Campobello Island is a New Brunswick island in a Canadian time zone. “This is a source of constant confusion, and we’ll go over it all when we’re together.” As a P.S,. she reminded us to bring a passport. “You’ll need it!”

Roosevelt Campobello International Park was created in 1964 after an international treaty was signed by Canada’s Prime Minister Lester B. Pearson and U.S. President Lyndon B. Johnson. Both countries provide financial support to the park, and Parks Canada and the U.S. National Park Service share responsibility for its upkeep.

The conference promises three days of writing workshops, facilitated discussions and nightly readings led by published authors Abigail Thomas and Debra Marquart. Any of you Safe & Sound blog followers who liked the memoir A Three Dog Life as much as I did will understand how eager I am to meet Abigail Thomas – she’s the one who wrote it. Debra Marquart is no slouch, either – I just downloaded an audio version of her memoir The Horizontal World and plan to finish it before we fly to Bangor in July.

Abigail Thomas is from upstate New York and Debra Marquart is from Iowa. Both teach writing during the year, so in addition to working on my own writing at the conference, I’m also hoping to pick up some teaching tips I can use in the memoir-writing classes I lead in Chicago when I get home.

Of course I’ll be bringing copies of my book Writing Out Loud to share with my new best friends Abigail and Debra. And with other Iota participants, too, whether I meet them in Maine, or in Canada.


Mondays with Mike: OMG, Ooooommmmmm

June 19, 201712 CommentsPosted in Mike Knezovich, Mondays with Mike

Some twenty years ago, when Beth and I lived for a couple years on the Outer Banks of North Carolina, one of our beach friends talked me into joining her at yoga class. I’d heard and read good things about yoga, but I confess that I had a crunchy granola prejudice against it that made me a little reluctant.

Plus—especially back then—yoga classes seemed to be attended overwhelmingly by women. Not that there’s anything wrong with that, and I like being around lots of women as much as the next person (if I were ever single again I’d do two things: get a puppy and walk it a lot, and take yoga). But it can make a person self-conscious.

But, our friend was persuasive and one day I joined her at class. I’m glad I did. Like lots of self-inflicted trepidations, my reluctance was not well founded. I really enjoyed the class. I learned that it’s surprisingly rigorous and relaxing at the same time. I got stronger, my balance improved, and my joints ached less.

My yoga bro Steve is threatening to bring this to class.

Of course, like a lot of things that are good for me, I let yoga lapse. I took a class here and there but never stayed with it. But over this past year, I’ve found myself wanting to say “oil can” more and more often when I get out of bed.

So I talked our friend Steve into joining me in a beginner’s class at Tejas Studios, just a healthy walk from our neighborhood.

And again, I was struck by how hard it was to do these things that don’t seem like they should be hard. And how much I sweated and how tired I got without ever leaving my little yoga mat. But it really felt great.

After our first class Steve and I turned our phones back on and found we had texts from our spouses. Steve’s spouse Laura, Beth and our friend Ruth were Kasey’s, a local watering hole, and we should meet them there. So Steve and I, relaxed and refreshed from yoga, bounced up in our elastic tights and our neonish yoga mats to meet our womenfolk, who were huddled around a table over their beers. As Steve put it, what’s wrong with this picture?

It was then that Laura noticed that my neon green yoga mat nearly matched my neon green Nikes. This was wholly unintentional: I’d purchased each online at steeply discounted prices because, well, they’re neon green. There were a few requisite Lululemon jokes and a good time was had by all, albeit much of it at Steve’s and my expense.

Steve couldn’t make the next class (he took a makeup session) so I made it through on my own. Again, it was rigorous enough for me to feel like I’d run several miles even though I never got out of a 10 square foot space.

On the way home, I remembered I needed some vegetables to go with the fish I was going to cook the next day. So I stopped at Trader Joe’s. And as I checked out, I realized: I’m in my yoga clothes, with my yoga mat, talking to a pierced, tattooed exuberantly happy clerk who clearly approved of me.

I called Beth from the store and explained the little tableau I found myself in. I felt like asking, “What’s happened to me?” At least she didn’t say “I don’t even know you anymore.”





It all came back to me then

June 18, 20173 CommentsPosted in book tour, careers/jobs for people who are blind, memoir writing

One of the many many things I love about people of a certain age? They answer their phones when you call.

Gwen and her big-hearted spirit lived to tell her story. Photo by Darlene Schweitzer.

After my new book Writing Out Loud came out last month, I dug up a computer file from a dozen years ago and started tracking down the seniors who’d been in the first memoir-writing class I led in Chicago. A few have moved away since then (some to the Great Beyond) but here’s another bonus to working with seniors: many never change their phone number. And so it was that I could pick up the phone, dial Gwen’s number from 2004 and, abracadabra! A familiar (and amazingly recognizable) voice answered.

A very moving and poignant essay Gwen wrote when I assigned “1968” as a writing prompt is featured in Chapter 8 of my new book. The subtitle to Writing Out Loud is “What a Blind Teacher Learned from Leading a Memoir Class for Seniors,” and boy, oh boy, did I learn a lot from Gwen.

I figured the 1968 prompt would lead to a lot of essays about the Democratic Convention in Chicago that year, but I was wrong. The writers had jobs in 1968. “We couldn’t take off work to go downtown and bother with that mess,” one of them told me.

Their essays definitely spoke of the times, though. Gwen read right after Tom that day in class. Tom grew up on Chicago’s South Side and wrote that he and his wife had decided to move their family to the suburbs that year. As Tom delicately put it, the neighborhood was “changing.”

Gwen and her husband had also decided to move their family to a new house in 1968. Over the phone last month Gwen and I had a spirited conversation about the essay she’d written about that move, and I invited her to come to a party celebrating Writing Out Loudwith writers from my Grace Place class here in Printers Row and the “Me, Myself and I” class that meets at the Chicago Cultural Center.

That party was last Friday afternoon, and Gwen and two friends drove 30 miles from the far south suburbs to be here with us. Attendees seemed tickled to meet Gwen and the writers from other classes. One party-goer told me, “It’s so great to put faces to the people in your book!” and I overheard someone else asking Gwen for an autograph.

I’ll leave you here with a promise to share more about other characters who’ve been with me at book launch parties and book signings the past few weeks. For now, here’s an excerpt from Gwen’s chapter, Chapter 8: “1968.”

“On the day of the closing we took our sons out to see their new home,” she reads, explaining it was located in the Rosemoor neighborhood on Chicago’s far South Side. “Our boys were excited to have a larger home, although they didn’t want to leave their friends. My husband and I were happy that the house had been vacated by the former owners and we had immediate possession.”
But Gwen’s husband called her at work the next day with disturbing news. Someone had tossed a chemical into their house – the chemical simmered throughout the night, eventually burning through the floor. A worker from People’s Gas Company who had been sent out to take a final meter reading the next morning noticed the windows were all black from the smoke. He called the fire department.

“The fireman, who knew how to enter a burning house, told us that if we had opened a door, the house would have exploded and been completely destroyed,” Gwen writes. “We were completely unaware that we were the first Black family to move into that block. Had we known, we would have skipped that area. I did not want to put my children in danger.”

Their three-year-old was afraid to enter the house, so the family moved into Gwen’s brother’s attic for a few weeks until her husband decided it was time to clean up the house and move in. He checked on it every evening during the process, hoping the culprits would return.

“But of course they didn’t,” Gwen reads. “And I was glad. I didn’t want a confrontation.”

After about a year, the family finally moved in. But Gwen tells us it took a long, long time before they could relax in the house. “It seemed that every time we started feeling comfortable there, the weather would turn humid and the smoke smell would seep down from the attic.” They lived there for 20 years, and after the kids were grown they moved to the south suburbs.

Gwen can barely speak for sobbing, but as she nears the end of her essay, she straightens herself, catches her breath, and finishes without a hint of anger or bitterness: “We cannot allow the actions of a few to poison our minds and cause us to react in a manner that would be completely contradictory to what Martin Luther King and other Black leaders have preached and marched against.”

When Gwen is finished reading, Tom says he thought that kind of thing had ended long before then. He had no idea people were still burning houses down like that in 1968. A quiet chorus of “uh huhs” rises from the other South-Siders in class. Gwen says she’d buried this whole ordeal deep inside until I gave the assignment to write about 1968. “It all came back to me then,” she says.

We were hot at Printers Row Lit Fest

June 15, 201711 CommentsPosted in book tour, careers/jobs for people who are blind, memoir writing, public speaking, writing

From left to right, Wanda Bridgeforth, moi, Anna Nessy Perlberg, and panel moderator Nancy Sayre, Editor/Publisher at Golden Alley Press. (Photo by Bev Miller.)

I assured the standing-room-only crowd at our Getting Your Memoir Off the Ground session at Printers Row Lit Fest Sunday morning that their wait for 95-year-old panelist Wanda Bridgeforth would be worth it. “Funny thing was, Wanda Jr. was waiting for me upstairs,” Wanda told me later. “And I was waiting for her downstairs!”

My sister Bev and an entourage of other friends were on the lookout for Wanda, too, and just as the crowd in room 4008 of Jones High School started shuffling their papers and fidgeting in their seats, Bev came in with good news. “Wanda has entered the building.”

The temperature outside was in the 90s, and Wanda entered without a sweat. The crowd cheered. After greeting her new admirers with a hearty, “I’m here!” Wanda settled into a seat at the front table next to Seeing Eye dog Whitney and me, and we were off.

Wanda was on our panel with Anna Nessy Perlberg, a fellow writer who also shares stories of life’s challenges and joys in the memoir-writing classes I lead in Chicago every week. Anna and Wanda are both featured in my new book Writing Out Loud and both of them read essays during our panel.

With her daughter’s help, Wanda Bridgeforth self-published her memoir, On The Move. Writing Out Loud and Anna Nessy Perlberg’s The House in Prague were both published by Golden Alley Press.

I shared tips on getting a memoir started, and Golden Alley Press publisher/editor Nancy Sayre spoke on the pros and cons of self-publishing, of working with a major publishing house, and of working with an independent publisher.

Our panel flew by, and friends there told me later that audience members were jotting notes down throughout. The last question during our Q&A was whether writing a memoir taught us something about ourselves that surprised us. I answered with some blah, blah, blah the way I do, and when I turned it over to Wanda, she started with, “Well, the thing I learned was…” She just couldn’t find her words, so we all held our breath in anticipation. And just like at the start of our presentation, the wait for Wanda was worth it. “I learned I could do it!” Anna responded with an exuberant, “Me, too!”

And of course I followed up by looking toward the audience and chirping, “And you can, too!”

Audience members stood in line afterwards to have us sign our books and ask nancy Sayre more questions. And I’m still receiving emails from Wanda’s new fans: they’re special-ordering copies of On the Move.