Blog

250,000 strong

February 4, 201714 CommentsPosted in guest blog, politics, Uncategorized

I am pleased to introduce my friend Rachel Arfa as a guest blogger today. Rachel and I both advocate for cultural accessibility, and we met, guess where? In a theater lobby after enjoying a play. Rachel is profoundly deaf, communicates by talking and lipreading and uses bilateral cochlear implants to hear. A 2017 Fellow in the Illinois Women’s Institute for Leadership (an organization training Democratic women to run for office), Rachel was there to help other people with disabilities participate in the Women’s March in Chicago on January 21, 2017.

by Rachel Arfa

A volunteer at the Womens March Chicago

Many volunteers helped make the Women’s March in Chicago accessible.

10,000.

10,000 people.

The number seemed daunting. We had just committed to providing accessibility for an event where the number of attendees might be as high as 10,000. Christena Gunther. Evan Hatfield. Risa Rifkind. Anna Cosner. We’d worked together on various cultural accessibility initiatives before, but never on this scale.

But we knew it would be worth it.

The details: Petrillo Stage in Grant Park, Saturday, January 21, 2017. The five of us met weeks ahead of the march to put together a plan to make the rally portion accessible. We wrote access information for the Women’s March website, conducted a site visit to scope out all the access points and determined placement for all the accessibility needs.

One week before the March, the location of the rally was changed.

We scuttled our initial plans, visited the new site at Jackson and Lake Shore Drive and re-assessed what would work.

And then the number of projected attendees grew from 10,000 to 22,000. This was getting big!

And then, the site changed again. Two days before the Saturday March, the location was moved to its final site, Jackson and Columbus. Weather reports were coming in, temperatures in Chicago were predicted to be well above average Saturday, and the final estimate of marchers was projected at anywhere from 50,000 to 65,000.

We met at the site the night before the march to walk through our plan and update the website about accessibility offerings – we wanted marchers with disabilities to know where to find accessibility tents if they needed more information once they arrived.

We were back at the site less than 12 hours later, at 6:30 a.m., to get ready for attendees to arrive. We’d recruited enthusiastic volunteers from Chicago’s theaters, museums and outdoor spaces – all had experience in working to make their own organizations welcoming and accessible to audiences with disabilities.

Rachel and her friends are in there!

Rachel and her friends are in there!

One accessibility tent was set up at the entrance to the rally, and the one near the stage was where attendees could check out audio description headsets and assistive listening devices. The audio describer set up her equipment in a spot with full view of the stage, armed with her stenographer’s mask. The American Sign Language (ASL) interpreters decided on their stage set-up. The screen for Open Captioning was placed on stage at optimal height for viewing. The chairs set up to provide seating for those unable to stand for extended periods of time were moveable, which created easy access for attendees using a wheelchair or mobility device. A DeafBlind participant was provided enough space for tactile interpreting to have access to what was happening on stage. Individuals who experience anxiety or PTSD had enough space to move around and not feel claustrophobic. And, oh yes. An easy route to the accessible port-a-potties was established as well.

The morning sped by as attendees arrived, but when I found the time, I reached out to some of them to ask if they’d be willing to let us know what their experience was like. Here are just three excerpts of many, many testimonials:

  • Bryen Yunashko: This was the first time that I, as a DeafBlind person, was able to fully access a political rally in Chicago. The efforts and constant dialogue by the accessibility team in the weeks following up to the March to ensure DeafBlind access was amazing, conscientious, dedicated and authentic. This event is a shining example for all future events in Chicago and elsewhere.
  • Aziza Nassar: The volunteers and staffers were very accommodating and culturally appropriate. Within seconds of my arrival to the gate, I was greeted by a woman who asked me and my friend (who is also a wheelchair user) whether we needed “dedicated assistance.” She pointed us in the direction of a tent full of volunteers just ready to assist, and another woman walked us down to the accessible viewing area for the rally stage pointing to the wheelchair accessible Port-a-Pottys.
  • Justin Cooper I knew that many of my friends would be in attendance and I wanted to be there to show my support. The accessibility that was provided made me feel like I was welcomed, that I was apart of the March, and that people with disabilities (especially women with disabilities) were included. I give credit to all the volunteers who helped.

These efforts were successful because disability access was integrated into the design of the event, including each time the venue changed. The March organizers recognized early on the need for disability access and supported our efforts after we’d come on board.

During the March it was announced not that there were 10,000 in attendance, not 22,000 in attendance, or even 50,000 in attendance. It was announced at an early point that there were 150,000 attendees. Then, a second announcement came saying there were 250,000 attendees. The march was a huge success, and we’d designed accessibility that was easily adaptable to the scale needed.

250,000 people.

250,000 strong.

This post was originally published on the Easterseals national blog last Thursday, February 2, 2017.

Mondays with Mike: Mary the miraculous

January 30, 201710 CommentsPosted in blindness, Mike Knezovich, Mondays with Mike, Uncategorized

Well, we sure live in interesting times.

I still have about a thousand too many thoughts to sort out before I try to make sense of it all. Not that I can do that, but it’ll be therapeutic to try.

screen-shot-2017-01-30-at-2-38-23-pm

Meantime, I turn my attention to Mary Tyler Moore, who—between the Dick Van Dyke show in real time, the Dick Van Dyke Show in after-school reruns, and the Mary Tyler Moore Show in real time, and in reruns—always seemed to be part of the fabric of my own and so many others’ lives.

Others have done a fantastic job of chronicling and evaluating her show business career. It was fantastic—and for anyone who knows anything about type 1 (or juvenile) diabetes, it borders on the miraculous.

Beth had already been listening to one of Moore’s memoirs when the news broke last week about Moore’s death. The two were diagnosed with type 1 about the same time, in 1966. Beth was much younger, of course, but Moore has always been something of a role model. The book Beth was listening to is called Growing Up Again: Life, Loves, and Oh Yeah, Diabetes. It includes details about the always dreary and often terrifying slog that is being a type 1 diabetic.

One particularly poignant passage about experiencing a low blood sugar episode:

I was enjoying myself window shopping, and even though the weather was warm, I was surprised when my reflection in a storefront revealed dark stains on my favorite shirt.

Hmm.

I was perspiring like a race horse. No, like a farm animal. Suddenly I felt like I was sinking into a swamp of anxiety.

I was surprised to find myself digging in my handbag. For what?

I couldn’t remember.

Ah, yes. Lifesavers. I’d been told to keep Lifesavers always with me in case I experienced an episode of low blood sugar. I preferred all cherry.

Yes! That’s what it was! Low blood sugar! I was now trying to deal with the shakes as I continued digging. Eureka! Under a crumbled handkerchief, and just to the right of my wallet, there lurked my salvation. Have you ever tried to open a roll of Lifesavers when your hands are shaking?

She also provides a vivid description of laser treatments to her eyes. The short of it is she suffered, though less severely, the same condition that cost Beth her eyesight. In people who have type 1, the tiny blood vessels in places like your kidneys or your retina can get clogged up over time. The body tries to compensate by growing new ones, but they’re weak, and they burst or leak. In the eyes, that leads to blobs that obstruct vision. Lasers are used to cauterize the new, unwanted vessels.

Her vision fluctuated, and she describes being in what I call visual limbo states—when she could see a little, but just enough to embarrass her self at parties or public outings.

One time when she accidentally took the wrong kind of insulin before bed, she passed out and was rescued by her husband. One kind of insulin is fast acting—you take it right before a meal or snack. The other is time-released. You take it before bed and it works to maintain a constant blood sugar level. She took the wrong kind before bed and it nearly killed her.

Beth and I have experienced every one of these situations, with slightly different details. There’s a tendency to think, “Well, you just take insulin.” I’m here to tell you, it’s not that simple. You can be totally vigilant, totally committed, and still have low blood sugar reactions. The alternative—to avoid passing out or suffer impaired judgment—is to run a little high all the time. But that can lead to long-term consequences.

And any time your hormones change—say, menopause (and pregnancy turns everything nutzoid), you have to find a new pattern of new doses, which almost always includes some trial and error.

That MTM could carry off her career the way she did, well, like I said, it’s miraculous. Here in Chicago, there’s another similar story—Ron Santo, the Hall of Fame Cubs third baseman, managed to play major league baseball at a star level. This, before we had things like two kinds of insulin or home blood testing devices.

I hate the damn disease. Absolutely hate it. So, if you, like me, enjoyed Mary Tyler Moore, think about giving to the Juvenile Diabetes Research Foundation. JDRF is a terrific organization—she had served as the international chairman of JDRF since 1984. In that role she testified in front of Congress and raised billions of dollars for research.

That research is promising on several fronts, and perhaps, maybe even in our lifetime, we can celebrate wiping type 1 diabetes off the map by tossing our hats in the air.

Guess who’s 88 years old today?

January 29, 201712 CommentsPosted in blindness, Blogroll, careers/jobs for people who are blind, guide dogs, Seeing Eye dogs, Uncategorized, Whitney, writing

Happy birthday, Seeing Eye! The oldest guide-dog school in America was incorporated this day in 1929 after co-founder Morris Frank returned from a pioneering guide dog program in Switzerland. He and his Seeing Eye dog Buddy are the pioneers of the guide dog movement in the United States, and I have him and everyone affiliated with the school to thank for Dora, Hanni, Harper and Whitney — the four heroic dogs the school trained especially for me. To celebrate, I’m reblogging a post I wrote five years ago for Bark magazine’s blog. The post is about my first weeks at home in Chicago with Whitney, and it demonstrates how the Seeing Eye’s work doesn’t end when we leave the school with our new dogs!

Consistency is the key.

Consistency is the key.

Beth Welcomes a New Seeing Eye Dog

January 23, 2012

You’d think having a new guide dog memorize routes and anticipate turns at corners would be the goal.

But it’s not.

Here’s how it’s supposed to work: I have the route memorized. I know how many streets we have to go forward before we turn left, then how many streets until we turn right again to get to our destination.

Whitney, my new two-year-old Labrador/Golden Retriever cross, guides me through our apartment lobby, we get ourselves situated on the sidewalk in the direction I want us to go, I command, “forward!” and my spunky sprite guides me safely to the curb. When she stops, I stop. That’s how I know we’re at the intersection. That, and the sound of cars. Whitney waits as I listen for traffic, and when I deem it is safe, I command her to lead me right, left or forward.

Whitney has a smart bump. It shows. In our first week home in Chicago she had already started memorizing my route to the pool where I swim laps, the cultural center where I teach memoir-writing classes, and my cubicle at my part-time job in the Willis (formerly known as Sears) Tower.

These routes became so familiar to Whitney that she knew to make the turns without bothering to go all the way to the curb first or waiting for my command. A near-miss in traffic with my last Seeing Eye dog, Harper, left him so afraid of traffic that he had to retire early. Our brush with that car, the months of work to encourage Harper past his fear, and the subsequent decision to retire him from guide work—it all shook me up, too.

Whitney’s decision to keep us away from the edge of the intersections, to just go ahead and make turns on her own, well, it meant I didn’t have to face the rush of traffic in front of us. I felt safe.

Until Whitney started crossing intersections diagonally, that is. Dang that smart bump! The girl is so clever that when she knew we’d be turning right or left once we crossed the street, she figured hey, why not save time? We’ll just go kitty-corner. Whitney had also taken to veering right and left long before our approach to any and all intersections, leaving us discombobulated as she anticipated a turn.

And if there is one place you especially don’t want to feel discombobulated with a Seeing Eye dog, it’s the approach to an intersection.

As it so often goes with dog training, the problem was consistency. I expected Whitney to take me right to the edge of a curb if I wanted to keep going straight (or if we were on our way somewhere new and I needed to know we were at an intersection). But on a familiar route? I’d let her decide for herself.

The Seeing Eye to the rescue! A trainer flew to Chicago to give me tips on which commands to use to drive Whitney all the way to the edge of the curb—the way she’d been taught at The Seeing Eye school. He showed me how to use the leash to encourage her to the edge. “Heap on the praise when you get there,” he urged. “Then stay right there a little while before giving her the command. Make sure she knows that you want her to stop right there and wait for your command at every single intersection.”

And you know what? It’s working. It’s comforting to know exactly where we are before we cross a street. Since The Seeing Eye tune-up, we don’t veer right and left before intersections anymore. Whitney knows what I expect of her, and she’s determined to get us to the curb.

Things are much clearer when I’m in charge. Whitney seems to appreciate the consistency, too. The more we work together, the more we trust each other. And best of all? She doesn’t cross intersections diagonally anymore!

I love this group. No one loves this group more than I do.

January 26, 201753 CommentsPosted in careers/jobs for people who are blind, guest blog, memoir writing, politics, travel, Uncategorized

Last week the prompt for my Wednesday memoir-writing class was, “How I Got through a Transition in Life that Wasn’t my Choice.” An overwhelming number of Chicagoans had voted against the new president, so I reasoned a lot of my writers might be concerned about Friday’s inauguration.  “For next week I want you to look at one of these transitions, — a relationship that split up? leaving a job? moving somewhere? — that you didn’t want to have happen. Tell readers how you managed to survive it.”

Writers came back with stories of divorces, career changes, and job lay offs. Some wrote about advice from experts getting them through. For others it was help from family and friends. Letter-writing campaigns. Sheer determination.

And then came Sharon Kramer’s turn to read. Sharon was one of many women in class who’d participated in Chicago’s Women’s March last Saturday, and the essay she read aloud in class told us that when all else fails, she turns to parody:

My Transition to Alternative Facts

by Sharon Kramer

Abraham Lincoln was the 5th president of the United States. The most popular sport in the United states is table tennis. Lake Michigan is slightly larger than the Atlantic Ocean but not as salty.

She's in there!

She’s in there!

You know those pesky things called facts? Remember them? A fact is something that has really occurred or is actually correct. Boring! Only losers believe in facts.

So, what is an alternative fact and is it ok to change reality in favor of this new kind of fact? Our esteemed president and his staff seem to think so. Me too. I happen to love alternative facts. It makes my life better. I mean really better.

But now as to why I am here. I want to address you, my classmates, the largest audience ever gathered of any writing class in the history of this great country. Really. This is a HUUUGE class. Thank you for coming. Much bigger than any class attended by Barack Hussein Obama or Lying Hillary.

I also want to let you know that I created a wonderful story for you today but gave it to our Renaissance Senior Center director to edit because Beth was out of the country and it was leaked to the lying press and I had to destroy it — for security reasons. Because I truly want to protect our great country as well as our Senior Center. I love this Senior Center. No-one, no-one, loves this senior center more than I do. I have sacrificed a lot for this place. For example, just today I gave up my Zumba class to be here with you.

You will be happy to know that as soon as my story is released, I will read it to you. You will be shocked at how great it is. Really. It is beautiful. Incredible. Beth would have loved my story and definitely posted it on her blog. The comments would have been extraordinary. Probably the most amazing comments she has received from any story on her blog — ever.

Don’t be upset though, for next week I will write another brilliant story and be able to share it with this incredible group of people. I love this group. No one loves this group more than I do. The story you will hear next week will make you laugh and cry at the same time. It will be flawless — a new standard for the written word and the unwritten word. And, with the support of the millions of people who love me, I am declaring this day next week — when I read my story – as a new holiday: National Writer’s Day in honor of me.

In the meantime, enjoy your weekend, you wonderful writers.

Signed: Sharon, a 25-year-old, 5 foot 10 inch, gorgeous blond bombshell, weighing in at 105 pounds and loving the alternative fact world.

Mondays with Mike: Far and away

January 23, 20175 CommentsPosted in Mike Knezovich, Mondays with Mike, travel, Uncategorized
The weather has been, all things considered, very pleasant.

The weather has been, all things considered, very pleasant.

Greetings from the land of towel warmers and biscuits. It’s gloriously sunny and only a little brisk in Edinburgh, Scotland. We’re a few steps downstairs at a little café drinking some potent black coffee, eating croissant and a bacon and cheese scone. We found it after being directed to a Starbuck’s just across the street—we chose wisely.

Wellington Coffee, our little slice of caffeine heaven.

Wellington Coffee, our little slice of caffeine heaven.

Last night we stopped at The Oxford Bar, the spot frequented by the fictional detective Inspector John Rebus in the entertaining series of mysteries by Edinburgh’s own Ian Rankin. Rankin has penned his thoughts about the real-life tavern.

Oxford Bar was all that. Or, I should say, it wasn’t all that. It was quiet. Civilized. It acknowledges its Rebus connection, but this is no Maragaritaville. It’s still just a pub.

The conversation was rich. Bartender George and Harry the patron were deep into talks about music. George used to play in a band full-time back in the 70s and 80s, and he’d taken up music again for fun. Business was at a civilized pace and between patrons, and between serving patrons, Harry reviewed the lyrics of Whiter Shade of Pale, which his present-time band had added to its repertoire. All of us found lots of common ground in our awe of songwriters, including Carole King, whom Harry absolutely revered.

Later we visited with Fiona and John and their two handsome sons, Andrew and Douglas. You may remember that Fiona is the sister of Sheelagh, our longtime friend who died from cancer several years ago. Fiona visited us last year. We are lucky to remain connected. We had a lovely evening, starting at a grand and traditional pub called Bennett’s, followed by dinner at Fiona and John’s.

George the bartender reviews lyrics while Beth and I enjoy a pint.

George the bartender reviews lyrics while Beth and I enjoy a pint.

Throughout our journey, conversation has inevitably turned toward our current president. What was striking is how well informed our UK friends are. For example, back at The Oxford Bar, Harry and George knew the intricacies of our three-headed system, and held out hope that it would insulate us and them from catastrophe. They also knew our election cycle: “It’ll be better in two years,” said Harry, hopeful for the prospect of a Congressional turnover in the wake of two years of expected nuttiness.

Before heading to Scotland, we spent three days with our friend Jim Neill at his London flat. We were in his living room on inauguration day. Jim is a political junkie and he and I watched the ceremony on BBC television while Beth sequestered herself for a nap.

For the record, things back in the USA don’t look a lot better from across the pond. (Also for the record, Jim immediately commented on how less-crowded the mall seemed compared to what he had remembered from previous inaugurations.)

An American should be reminded that, for better or worse, we have carved out a primary and incontrovertibly important (as opposed to “alternate”) role in world affairs. These people in the UK are dealing with two unnerving developments: Brexit and a president that to them appears to be at a developmental level somewhere between high school senior and college sophomore.

Our time with Jim included a visit to his father’s home in Hartlepool, located in a region that the Motorway signs label simply as The North. Hartlepool was once a shipbuilding power, but went through the same kind of hollowing out during economic transitions that our so-called rustbelt cities of the USA did.

Hartlepool is also a long, long way from London—not so much in distance as culture. Our talks with people along our journey confirmed that some things are universal. For one, the urban/non-urban divide. We have a good friend, Lydia, who immigrated north (and I really think that’s the best term) to Chicago from the South to the chagrin of her family. They routinely and painfully referred to Lydia’s adopted home as That Chicago. Someone spoke to us and used the phrase That London in much the same way Lydia’s parents used That Chicago.

We stayed overnight at Jim’s father’s house. Jack is a hale octogenarian who walked us at a remarkable pace to the house of Carol and Phillip, his daughter and son-in-law who live about a 10 minute stroll away.

Our hosts served wine and finger food and we didn’t have to work hard to coax his father and sister into telling embarrassing stories from Jim’s childhood. We also got to know Carol and Phillip’s youngest daughter, and learned about their son who is working in London, and their other daughter, a student at university.

At some point, Phillip recalled his time as a teenager in the Navy, when a few of his ports of call included American stops. Out of the blue, as he gazed off in his own imagination, he said, softly but firmly, “I love America.”

I wasn’t sure I’d heard him correctly and asked him to repeat it. He went on to tell stories about his times in the USA, stories that his daughter hadn’t heard and which opened her eyes to the idea that her father had not always been her father.

Phillip recalled one stop in Norfolk, Virginia, where his British aircraft carrier moored next to the U.S.S. Nimitz. “Our ship was the biggest in our navy, and the Nimitz was twice as large!” More than that, though, he was impressed by the kindness of the American families that met the Brits at the dock to offer them housing or any help they needed during their stay. Norfolk’s residents know what it is to have loved ones at sea for extended periods.

Mostly, I’ve stayed away from news sites and social media as much as possible. While we’re away, I’m taking a badly needed break. But I did see the reports about the marches around the world, in cities across the USA, and particularly, my Chicago friends’ social media dispatches. It was heartening, and I got the same feeling—strangely—that I’d had when we were stranded in New Orleans (how awful!) a few years ago because a huge snowstorm had shut down Chicago’s airports.

My first impulse: I wanted to be there, despite it all. It is home. All of it, good and bad.

Than again, a single-malt later, I realized I’ll be there soon enough.

See you then.