None of the events I presented at in Madison last week had much to do with children’s books, but I brought a copy of Hanni and Beth: Safe & Sound with me anyway. I always do.

Here's Anthony's depiction of my bread-baking, from Hanni and Beth, Safe & Sound.

Strangers who meet us often ask what Hanni and I are doing on the road. “I’m a writer,” I tell them, whipping the book out of my bag and waving it in their general direction. This makes them uncomfortable. I know. They’re just sure this book the blind lady is thrusting towards them is an amateur piece of work. After an initial silence, I hear the pages start to turn. Gasps. “It’s beautiful!” they say, unable to hide the surprise in their voices.

It was a very, very lucky day for me when Blue Marlin Publications chose Anthony Alex LeTourneau to illustrate my children’s book. This week debut authors Karen Duncan and Kate Hannigan Issa are enjoying that same lucky fate: Blue Marlin Publications launched Karen and Kate’s new children’s book last Friday, and it features illustrations by, who else? Anthony Alex LeTourneau! The Good Fun! Book: 12 Months of Parties That Celebrate Service is filled with fun ideas to encourage elementary school children to participate in service projects that can make a real difference. Here’s an excerpt From a guest post Kate wrote for Cynthia Leitich Smith’s Sensations blog:

So we presented our ideas to Blue Marlin Publications, a small house out of New York with a big commitment to giving back. Publisher Francine Poppo Rich – who had published fellow Chicago children’s author Beth Finke’s award-winning Hanni and Beth, Safe & Sound (Blue Marlin, 2007) and donated five percent of proceeds to Seedlings Braille Books For Children, a nonprofit in Michigan that sells their Braille books for less than $10 each – had a track record for giving back. It felt like a good fit.

The Good Fun Book will make a great holiday gift. And hey, if you click on this cover image, you’ll see a child pasting the cover of *our* book onto a bookcase. Good Fun!

A good fit, indeed! The Good Fun! Book hit stores on October 22, national Make a Difference Day. Publisher Francine Rich and her family joined the authors — and over 400 other volunteers — in Washington, DC last Saturday to celebrate the book launch and help build a playground with the nonprofit KaBoom. Earlier in the day, Blue Marlin President & CEO (and Francine’s delightful husband) Jude T. Rich joined Kate at Ebbitt’s Grill as she signed books for more than 200 kids at the launch of generationOn, a new young volunteers program sponsored by the Points of Light Institute.

I am so proud to be affiliated with Blue Marlin and this new book they published. What a great way to help kids learn the incredible rewards that come from service to others. And with Anthony Alex LeTourneau as the illustrator, even a blind woman can tell you: The Good Fun! Book is beautiful.

If you’ve been reading my blog lately, you know I’ve been in Madison the last week touting – and presenting at – the Vision Midwest conference. What you might not know, however, is that my husband was asked to participate in this conference, too. Mike sat on a panel Saturday morning, and I am happy to introduce him here now as a guest blogger to tell you all about it.

Wedding day, July 28, 1984, photo by Rick Amodt

Survivors Love Company

by Mike Knezovich

Beth loves a hotel room, if you haven’t figured that out by now. That’s partly for the same reasons lots of us do–a room at a hotel often means a special occasion. For Beth, though, it means a sort of idealized living space. Everything she needs is close and easy to find.

And so it is in our hotel in Madison. Beth arrived here earlier this week. By the time I arrived she’d settled in exactly as she likes to–Hanni’s stuff at a particular point at the foot of the bed, her own bag at another, and so on. I’m happy to fit my stuff around her blueprint, and it works splendidly.

But it hasn’t always worked so well. There was a time when our getaways to hotel rooms would begin rife with tension–and sometimes with a fight and hurt feelings. We’d walk through our door, I’d drop the bags and be giddy with excitement,  impatient to head out on an adventure. Beth, meanwhile, would immediately begin acclimating herself to our temporary digs. Hands in front of her, walking slowly–sometimes toward a knee-high end table, or a protruding wall-mounted shelf or…and I couldn’t help myself. I’d say “a little to the left” or “Lookout!” or worse yet, walk over to guide her around trouble. She’d get angry that I didn’t just let her do it her way, and that I’d broken her concentration. I’d get mad that she was mad. I was only trying to help, after all.

Those days, happily, are over. We’ve reached the point where we can talk about things like this–things where blindness requires reasonable accommodation on both our parts. But it wasn’t easy and as I learned at my panel discussion yesterday, it isn’t easy for anyone. The panel was for and about those of us in mixed partnerships–where one is visually impaired and the other is sighted. It was moderated by Chris Quinn, a marriage and family therapist. Quinn wasn’t always a therapist. He was a navy fighter pilot, and then a commerical airliner pilot–the holy grail in aviation–until he began losing his eyesight. He was married at the time, but his marriage eventually ended in divorce. For the past eight years, he’s been in a happy relationship–and his sighted partner was on the panel. Which is all to say, Chris knew his stuff.

I heard some heartachingly familiar stories from my fellow panelists. Betsy had lost her sight to diabetic retinopathy just as Beth had, and she recalled the laborious recovery period after retina surgery. Like Beth, Betsy had been required to lie face down for months. That allowed a gas bubble injected during surgery to rise and press against the retina to prevent the retina from detaching as it healed. Harder still to hear and just as familiar was her story about cleaning the kitchen shortly after losing her sight. She is a determined person and made up her mind to pull her weight around the house, as she always had. But after she finished in the kitchen one day, she heard noises and realized her husband was cleaning up after her.

You might think that was a nice thing. But just after a person loses his or her sight, self-confidence and self-assurance are in short supply.  And there was the time she made cinnamon toast for her kids–except she grabbed the chili powder instead of the cinnamon. Her 10 year old hugged her and broke the news. We winced and laughed at the same time.

A couple on the panel–the husband sighted, his spouse gradually losing vision to macular degeneration–told similar stories. In fact, describing himself as a neat freak, he said he and his wife finally talked about it and negotiated a deal: She could cook and bake as much as she wanted–guilt-free–and he could clean up after–guilt-free. There was a couple on the verge of retirement, but their retirement plans had been torpedoed by the husband’s vision loss. They’d been planning for years to live on a lake. Now, he can’t drive anymore, and everything is different. “I’m feeling overwhelmed,” said his spouse.

A woman in the audience explained that as her sight has grown worse, she must enlarge text to the point where she can only see one word at a time. She recalled realizing that without the context of the sentence, she couldn’t understand what she was reading. She said she felt stupid and useless and that she broke down into tears when she told her boyfriend about it. “He just said ‘I don’t think you’re stupid,’ and mostly he just listened.”

The sighted contingency took note–because often, as much as we want to make things right, what we learn is that the very best thing we can do is be there and listen. And our partners have to be willing te tell us this stuff. Another lesson was that as unique as our situations are, none of us are alone. And I hope–and believe–that those who attended who are on the front end of this experience learned that it gets better.

The main lesson I think everyone took away from the panel was you have to find a away to talk about things no matter how uncomfortable.

During our Wisconsin Public Radio interview Wednesday my fellow guest Jay Martin happened to mention that he’d been in the assistive technology (AT) field for 11 years. AT is a relatively new field, so 11 years makes Jay somewhat of a pioneer.

Jay walked Hanni and me to the University of Wisconsin Union after our interview, and that gave me a chance to ask him one question that didn’t get asked over the radio. “What motivated you to get involved in assistive technology in the first place?“ That’s when he told me about his son’s accident. Liam, now age 26, was paralyzed in a diving accident in 1999. From a University of Wisconsin article:

At the time of Liam’s accident, Martin was director of UW–Madison’s Engine Research Center and had studied internal combustion for nearly 20 years. But upon returning to work after his son left the hospital, he found that disabilities, rather than engines, were constantly on his mind.

Jay talked to a mentor in the engineering department about switching his research focus to assistive technology. A number of his colleagues were interested in doing similar research, and in 2002 the Center for Rehabilitation Engineering and Assistive Technology (UW-CREATe) was born, taking an engineer’s approach to improving the lives of people with disabilities. Again from that UW article:

Today, more than 10 faculty and staff researchers and four times as many undergraduate and graduate students carry out the center’s academic goals of teaching, learning and research.

Jay urged me to come to AT Expo 2010 at the University of Wisconsin College of Engineering Thursday. “It focuses on mobility issues,” he acknowledged. “But we have a few sessions about vision, too.” I took up his offer, and I’m glad I did. Both sessions I attended yesterday were fantastic. Not simply because of the wonderment of the new technology, but because the presenters were honest about the limitations.

That's the BrainPort system, from their Web site.

BrainPort is a device that translates signals from a tiny camera into electrical pulses. Users put a device in their mouths and feel light zaps on their tongues in response to visual stimuli. The presenters yesterday admitted the challenges to using this device are significant. The BrainPort provides information in two dimensions,
like a line drawing on a piece of paper. User’s have to translate this information into things like perspective, dimension, and location. The presenters were proud to tell us that Erik Weihenmayer, the blind man who reached the top of Mount Everest, is experimenting with their device while he climbs. “But you know the thing he likes best about it?” they admitted with a shrug. “He can use it to figure out where his coffee cup is and grab it off the kitchen table.”

David Ross, a biomedical research engineer for the Department of Veteran Affairs, gave a presentation on cell phones that can scan things and read them aloud. David pointed out, however, that people who can see naturally narrow in on what is important to focus on in their line of vision. People who are blind and traveling through space, however, will have no idea where to point the phone to get a reading. As is, the technology could be useful in helping those of us who are blind confirm we’ve found what we’re looking for. “Those of us who are sighted use our vision to do this all the time,” he said. “We feel something with our hands, then look at it to make sure it’s what we thought it was.”

The best part of the afternoon? Meeting Jay Martin’s son. Liam finished high school with his graduating class and went on to receive a degree in psychology from University of Wisconsin. These days Liam works as a mentor for Midwest Alliance, an effort to encourage students with disabilities toward careers in science, technology, engineering and math.

Liam was manning the Midwest Alliance booth at the expo. He told me he likes his job there, but said his real interest is in music. And radio.

Our conversation took off from there. I told him how I got started at National Public Radio, he told me about the shows he’s put together for WORT, a community radio station in Madison. We talked about radio internships, whether a person could do a virtual internship, and if not, what cities in the United States have the most accessible public transportation. We’d been talking nearly an hour before I finally took out my phone to call for the hotel shuttle to pick me up.

“Would it be easier if we gave you a ride?” Liam asked. “I’ve gotta go back to my office anyway.” He and his colleague Chris ended up chauffeuring me to my next stop, a rendezvous with a Madison friend at a groovy coffee shop. We exchanged email addresses, and as Hanni led me to my cup of capucino, Chris and Liam took off in the conversion van.

Geez. The Vision Midwest conference hasn’t even started yet, and already I’ve met so many very talented – and very cool – people. What will today bring? I can’t wait to find out!

Tune into Wisconsin Public Radio tomorrow

Hey, I’m going to be on Wisconsin Public Radio tomorrow morning from 11 to 11:45 am (Central Time), and you don’t even have to live near Madison to join the conversation. Would love to hear from you — Use the toll-free call-in number (1-800-642-1234) or you can e-mail your Question to talk@wpr.org. I’ll be appearing with Jay Martin (director of the University of Wisconsin’s Assistive Rehabilitation and Technology Design sequence) and we’ll talk about communication devices and adaptive technology. I’ll also be touting the Vision Midwest Conference that 12 State, Inc is putting on at Alliant Energy Center in Madison this weekend. From their web
site:

The Vision Midwest Conference for blind and visually impaired individuals and the professionals who serve them offers educational, sports and cultural opportunities with a Midwestern focus.

The presenter schedule is pretty entertaining to read – it lists presentations on everything from careers to cell phones, cutting edge stem cell treatments to sensory gardening. And get this for a session title: “A Guide to the Solar System with Digital Talking Text.” Whew! Sounds interesting, but I might opt for the “Home Brew/Distillery Tour” during that time slot instead.

During free time we’re invited to go on tactile tours of local art museums, participate in talking GPS scavenger hunts, try out a VIYM (Visually Impaired Yoga Mat), and ride tandems on Madison’s fabulous bike paths. And hey, what would a conference in Wisconsin be with out a bowling tournament? This one is at an alley with an absolutely perfect Wisconsin name: Schwoegler’s.

I’m giving two presentations on Friday: one on writing as a career at 1pm, and another about blind blogging at 4 p.m. Mike will join me on Saturday — he’s sitting on a panel about relationships where one spouse is sighted and the other is blind.

Okay, enough. My bus for Madison leaves in a few hours, and I’d better get packing. If you have any questions about adaptive technology or this weekend’s Vision Midwest Conference, I hope you’ll call into the show tomorrow — I’ll be all ears.

Seems like Hanni and I had just returned home from that Youth Festival in Champaign when we found ourselves boarding a train again Monday morning. This time, our destination was Glencoe, IL. Librarian Melissa Henderson met us at the train station and led us to a local coffee shop for a snack before our morning presentation at the Glencoe Public Library. In between bites of cream cheese and lox on a bialy, I asked Melissa where she’d gone to library school.

“U of I,” she boasted. She had reason to be proud: the U.S. News and World Report ranks University of Illinois’ Graduate School of Library and Information Science (GSLIS) the top program in the nation. “I Was in their LEEP program,” she said. “I absolutely loved it!”

Melissa was amazed I knew what the “LEEP program” was. And she nearly fell off her chair when I told her I am friends with Sandy Wolf.

Back when we lived in Urbana, the University of Illinois Alumni Magazine asked me to write a story about LeEp, an online program at GSLIS that allows students far away to experience synchronous education — live sessions where the professors and students are on line at the same time, interacting with each other. Students are required to spend brief periods of time on the U of I campus taking course work, including a ten-day on-campus summer stay in Urbana that Melissa lovingly referred to as “boot camp.”

The wonderful Sandy Wolf is a librarian at GSLIS, and she was our next-door neighbor when we lived in Urbana. Sandy was a huge help to me with my magazine story about the library school. She connected me with all the right people, including a student named Jenny Schwartzberg. Jenny is deaf and uses a cochlear implant and a hearing aid to enhance both her hearing and her speaking skills. Wwhen I interviewed Jenny, she told me that taking coursework on line allowed her to work on her Masters and keep her day job as a Collection Development Assistant and Gift Specialist at the Newberry Library in Chicago. From my article:

Schwartzberg’s hearing impairment gave LEEP the opportunity to further develop technological delivery of the program. {Manager of Instructional Technology Jill} Gengler worked with LEEP colleagues and University of Illinois’ Disability Resources and Educational Services Division to provide captioning for lectures broadcast over Real Audio. “We provided a second screen for her with captions,” {Publicity and Communications Coordinator Kim}Schmidt said.

“It’s pretty technical, and it delivers the lectures to her in real time, you know, the same time the other students are listening.”

Melissa the Glencoe librarian gushed about the U of I program, and especially about my pal Sandy Wolf. . “I love Sandy! She’s the one who got me through graduate school, she’s the one who would find you the stuff no one else could. She’d even FedEx it to you sometimes, she was so, so good to me,” Melissa said, laughing as she remembered to add one more line. “Oh, And to all the other students, too!” Sandy has been working with GSLIS since 1984. It’s no wonder she received a Distinguished Service Award from the American Library Association last year.

At the end of my talk, I let Hanni off harness and she got rubbed by...everyone.

The coincidences didn’t stop there. As Hanni and I were settling ourselves in to start our presentation, an energetic young woman came bounding up to introduce herself. It was Jocelyn Snower. She’s the woman I wrote about in the Chicago Tribuneafter her boss realized she was visually impaired and fired her. All our interviews had been online or over the phone, so this was the first time I met her in person. She lives in Glencoe, and she brought all four of her kids with her to hear me speak. “I hope they behave!” she laughed.

They did. Behave, I mean. It was a thrill to have the Snower family in the audience, along with so many other kids from Glencoe. My favorite question after our presentation this time came from a little girl in the front row. “So can you not see spiders?” she asked, almost in a whisper.

I told her no, I couldn’t. ”Are you afraid of spiders?” I asked, knowing full well what the answer would be.

”Yes!” she said.

”I am, too,” I confessed to her. “So really, it’s not such a bad thing, my not being able to see spiders anymore. I just pretend they aren’t there.”