On September 3, 1986, Beth called me at work and said, “Today’s the day.” As in, her OB-GYN was scheduling a C-section for later that day to deliver our son.

Because Beth’s a type 1 diabetic she routinely—thanks to the kindness of friends—made twice-weekly visits to the doctor to monitor things. So I was used to getting calls to report on her visit, and I also was used to it being good news—her pregnancy went remarkably well. Since this was three weeks before the due date, though, I wasn’t quite prepared to find out it was happening THAT DAY. I went all Dick Van Dyke driving Laura to the hospital, stammering and mumbling, “It’s today, it’s TODAY.”

Gus had a tough start. But he’s a tough cookie.

Well, as readers of this blog—or of Beth’s memoir Long Time, No See— already know, things didn’t go swimmingly. I went home that night, leaving Beth to float on a painkiller cloud at the hospital, and having been told that our son Gus had roughly a 50-50 chance of making it through the night.

Well he made it. There was a month in neonatal intensive care, and a lot of two steps forward and one step back—when the bilirubins (great band name) were finally down to normal there was a new respiratory thing, after that….

But he did get better and stronger. On the day before he came home, however, we got the crushing news that he had a very rare genetic disorder called trisomy 12p. What very little was known about it was all very bad.

One good thing about the lack of information, though, was that we didn’t know anything about expected life span. We knew it was likely to be shorter than normal, but even that wasn’t a sure thing.

And so, it was one day at a time. And the days have added up. Gus will reach the ripe old age of thirty come Saturday. We’ll probably get him and his roommates some Chinese food.

Our little man and his mom.

In other posts here at the blog I’ve touched on how it can be a complicated thing to contemplate Gus and his life with us and now at his group home in Wisconsin.

This week, it’s not complicated. Here’s to your 30^th, Gus.

The writers in the memoir classes I lead keep me amused, alert and alive. One of them phoned this week bemoaning our assignment. “I’ve been thinking and thinking about it all week,” she said. “I can’t come up with anything to write about. I want to keep doing everything! We both laughed. “You are my role model,” I told her. I meant it.

The assignment this past week? Never Again. “If you’ve ever gone to a new place or tried a new experience and decided later that you’d never do that again, tell your readers about that,” I said, noting that this assignment also provides an opportunity to express thoughts about someone or something they miss. “And if you are happily retired or feeling grateful about something you are never going to have to do again, write about that.”

A writer born in Germany came back with a poignant piece about the holocaust, and I wasn’t surprised by the tributes writers wrote to friends who had died. What did surprise me was the number of Never Again essays that had something to do with water.

Mel described taking scuba lessons in an indoor pool in Chicago decades ago., He passed the test, headed to Florida, rented scuba gear, jumped off a boat and into the Atlantic, and then…unbearable ear pain. When I complimented the vivid descriptions of the shapes, colors and sizes of schoolfish Mel had managed to get a look at before the ear ache forced him to resurface, he just shrugged. “It’s easy to remember when you only go once.”

Kathy’s essay was about her attempts to water ski. “It wasn’t until I was 23 and moved to Chicago that I came face to face with this new challenge,” she wrote. Kathy described her first try in Lake Michigan, the many different occasions and bodies of water where she’d attempted again, and ended up with a pretty strong metaphor on the likelihood of her giving it one more try: “The possibility that Katherine Zartman, at 83, would attempt to water ski is about as likely as North Korea’s Kim Jung-un receiving the Nobel Peace Prize.”

That’s the Brigantine Romance. Michael Graff spent four months aboard the Romance as a crew member–thanks to Michael for the photo.

Michael was only 20 years old when he worked on the Romance, a two-masted Brigantine sailing vessel in the Caribbean. His stint on the ship lasted four months, and he did everything from furl sails to galley duty. He even stood at the helm to steer from time to time.

When young 20-year-old Michael was leaving the Romance to return to college, he brooded out loud that he’d never be a sailor again. The ship’s first mate responded, assuring Michael he would always be a sailor.

That first mate was right: Michael sails his own 13 foot sunfish on Lake Michigan now. “When the lake is rough, I’m reminded of my days on the Romance,” he wrote.  “I’ve never sailed on another square rigger, but I did drive my dad’s 1975 Cadillac Fleetwood Brougham. It was pretty big, too.”

And that brings me to one last common response to my Never Again prompt. Driving.

Sharon doesn’t own a car. She rarely drives, but when she got a letter from the Illinois Secretary of State saying her driver’s license would expire on her birthday this year, she took it on as a challenge, studying for the written test, taking the practice written test online over and over again until she finally aced it. In practice, at least.

It’d been a long time since Sharon had been behind the wheel, and she knew she’d should brush up on driving, too. Without a car of her own, she relied on stimulation. “In my minds’ eye, I practiced parallel parking and stopping at the white line.” The night before the test, she had a dream about being bas mitzvahed. “I guess I thought of all of this study as bad a studying the Torah.”

Sharon meditated on the morning of the test, chugged her tea and left for the car rental office. She’d asked for a “simple model,” and drove it to the DMV no problem. A clerk there told her that since she hadn’t had any moving violations for the past year, she wouldn’t need to take the written exam. “I should have been relieved,” she wrote. “But I felt cheated, as I had studied so much” And so, it was on to the driving test. In Sharon’s words:

A tester came to my window and asked me to turn on my left and right signals. Then he asked me to sound the horn. I looked at the steering wheel and there were 6 buttons on it: three to the left and three to the right. I pressed each one. Nothing happened. At the car rental agency, they forgot to tell me where the horn was.

“Where do you usually find the car horn?” the tester asked me.

I pressed the middle of the steering wheel, and there it was. He said, “Not a very good start for you.”

Sharon ended up doing fine in the driving test. “Near the end, I thought, ‘I’ve got this one,’” she wrote. Sure enough, she walked out of the DMV with a new license in hand. She had the rental car for the rest of the day. What to do? Drive around the city. “I stopped for stop signs short of the sign, I went down a one way street the wrong way, I made a u-turn in a non-u-turn area,” she wrote. What the $*) @! was she doing? She wasn’t sure until she sat down to write her essay for class. “I think I was trying to get a moving violation — that way next year I can show everyone at the DMV how smart I am.”

My “Eyebrows up!” award for this week goes to Jane, a writer whose macular degeneration diagnosis left her saying “never again” to more than just driving. “I was told that smoking was very detrimental to my eyesight,” she wrote. “I had to give up this pleasure.” When it became difficult to read books in print, she learned how to use a digital player to listen to audio books. And when she gave up driving, she started memorizing the Chicago Transit Authority’s bus and train schedules.

Jane ended her essay telling readers that in her dreams now, she still reads books, still smokes cigarettes, and still drives a car. In class she allowed that in some dreams, she is doing all three at once. “There is a humorous aspect to these Never Agains,” Jane wrote. “This makes me look forward to going to sleep.”

Every year, Chicago hosts the Air and Water Show, a weekend of modern and vintage airplanes performing aerobatics, skydiving, all played out in front of a gazillion spectators along Chicago’s North Avenue Beach.

In truth, it’s a lot more air than water, though lots and lots of people watch it from their boats. A standing feature is either the U.S. Navy’s Blue Angels or the U.S. Air Force’s Thunderbirds. You probably know the deal—screaming fighter jets flying loops and formations.

It’s impressive. And if you’re not ready for it, terrifying. I was sitting at my home office desk last Thursday and heard this high-pitched whine getting closer and closer and I’m thinking, OK, something’s about to crash around here…. And then this window-rattling thunder. And then, light bulb, “Oh yeah, practice day for the air and water show.”

It honestly is awesome in a terrifying way. And even more terrifying for our neighbor, a veteran who was deployed in Afghanistan who wrestles mightily with post-traumatic stress disorder. We ran into him in the elevator Thursday evening.

The earlier thunder from the jets came up. We asked how he did with that. Not great, was the thrust of his answer. But beyond that, he was truly perplexed: “Those are killing machines,” he said. “People don’t connect them with the reality of war.”

His comment got me thinking about something else that’s been poking at some part of my brain. Awhile back I saw a big ad at a bus station for Jockey underwear. It’s part of a series showing real people. One is a female firefighter in Jockeys, for example. They’re effective.

Chris Van Etten, the former Marine featured in the Jockey ad.

In another, the one that sort of arrested me, it’s a double amputee in Jockeys. Not just any double amputee, but a former Marine who lost those legs in Afghanistan. Disabilities of one kind or another have been part of my life for a long time now. I’m not squeamish. I absolutely feel fortunate to live in a place and time where people with one disability or another are, as Beth wrote in her last post, part of the fabric of life, and not cloistered.

What’s eating at me is ambivalence. On one hand: Good for that Marine. He suffered, he survived. I can’t imagine what he experienced. He’s moving forward. He’s providing a great example to others. He probably makes some money off the ad. It’s his choice, so he’s not being exploited. And a disabled person is right out there, showing it can be done.

On the other: Am I sure he’s not getting exploited—just a little? (FYI, Kenneth Cole used another veteran amputee the year prior in a campaign for its men’s fragrance.)

More important—am I getting used to this? Am I getting inured to the idea of war being normal and that we somehow can put mangled soldiers back together again? So it’s not that bad?

Given my discomfort, that answer is no—I’m happy to realize I’m not getting used to it.

And I don’t want to.

Roughly one in five Americans lives with a disability. So where is our pride movement?

That’s the subhead to an op-ed piece called Becoming Disabled in the New York Times Sunday Review this week. The piece was written by Rosemarie Garland-Thomson, an academic who has a disability.

The piece is well-written and looooooooooong — Professor Garland-Thomson shares plenty of statistics and numbers about people with disabilities. In addition to the Centers for Disease Control and Prevention estimate in the subhead (one in five adults in the United States is living with a disability), the piece links to a National Organization on Disability study saying 56 million people in America have a disability. People with disabilities are the largest minority group in the United States, and that group is growing. And so, Professor Garland-Thomson reasons, “Because almost all of us will experience disability sometime in our lives, having to navigate one early in life can be a great advantage.”

Thanks to the ADA, riding a train is a yawn for Whitney.

Really?

The professor did her homework for this piece, covering everything from the “correct” way to refer to disability as a new “politicized identity” to how studying the history and culture of disability allowed her to “come out of the closet” about hers. What she didn’t do in her piece, however, was answer the question in the subhead. “Where is our pride movement?”, she asks.

I think I have the answer. I cannot speak for all people with disabilities, but I do not find losing my sight early in life to be a “great advantage.” I am not proud of being blind, and I can’t imagine marching in a parade to boast about my disability.

I’d rather be able to see.

That said, I am not ashamed of being blind, either, and I think that’s the important issue here. In the op-ed, Professor Garland-Thomson points out that disability is everywhere once you start noticing it. “Wheelchair users or people with walkers, hearing aids, canes, service animals, prosthetic limbs or breathing devices may seem to appear out of nowhere,” she writes. “When they were in fact there all the time.”

This is due in large part to the passage of the Americans with Disabilities Act (ADA) in 1990. Thanks to the ADA and other civil rights legislation, I’m able to access audio books from the National Library Service, use my talking computer to access web sites, have my guide dog lead me onto buses, trains and airplanes, use Braille to find my room number in hotels, check out menus on line before we eat out, procure health care even though I have a pre-existing condition, and vote on my own using a special audio machine. If you live in my neighborhood, you’ve seen me out and about with my Seeing Eye dog. We’re part of the fabric.

I should add that another critical piece of legislation that has helped people with disabilities go mainstream is often overlooked. Back in 1975, the Education for All Handicapped Children Act (EHA) gave children with disabilities the same opportunity for education as those students who do not have a disability. That act gave way in 1990 to the updated Individuals with Disabilities Act (IDEA). The result: Kids with disabilities are part of the everyday fabric of day to day life from an early age.

Americans with and without disabilities can take pride in the legislators and lobbyists and supporters who helped pass the ADA and the laws that led up to it. All of us should take pride of our resourcefulness, the different ways we manage to do the things we want to do, and how, throughout our history, Americans have fought together for civil rights legislation to reorganize and rebuild our country into one that allows everyone to participate.

I’m proud of all of us.

I published my quick review of our Too Much Light performance earlier this week, and then it dawned on me. Some of you might like a description of what the show actually looked like. Reveca Torres to the rescue!

I played a toilet paper roll dispenser Saturday in Reveca’s play called The Anti-Toilet. Reveca was one of the disco dancers in my Night at the Emerald City Disco play. We got to know each other in class, and Reveca generously agreed to write a guest post here about our Saturday performance from her point of, well….view.

by Reveca Torres

Reveca was one of the dancers in my play “Night at the Emerald City Disco.” Photo by Malic White.

My thoughts late Saturday afternoon once our Too Much Light performance was over: “Phew! Glad that’s over. I was nervous! Glad I’m not an actor. Not planning on doing that again soon.”

My thoughts Sunday morning with coffee: “I had so much fun! I should do that again!”

Some background: This summer the Neo-Futurists used grants they’d received from The Chicago Community Trust and Alphawood Foundation Chicago to team up with the Victory Gardens Access Project to offer their popular Intro to Too Much Light playwriting program free of charge. The class was accessible to performers and writers with and without disabilities, and last Saturday we presented our two-minute plays to the public.

The performance was sprinkled with short plays written and performed by our class, each causing moments of laughter, intensity, awkwardness, sadness, compassion, and a whole spectrum of emotions and reactions from the audience. The lights and sound crew helped bring the words and actions to life by offering a soft backdrop or intense lights-out.

Performers showed up at noon to go through our rehearsal and tech. Some of us were maybe more nervous than others — pacing, stretching, sitting in a corner reciting lines. Looking out into the theatre and observing the empty red seats I wondered how many people would show up and if I was going to blank.

Right before the show we huddled up, put our hands in the center and said, “For Whitney.” At that moment I gave myself a mental pep talk. “OK, this is for Whitney. It’s not about me. You know your lines. Suck it up and don’t f*** up!”

I went to my spot next to Beth and Andrew, shut my eyes…took a deep breath…exhaled. bright lights in my face and the audience disappeared into the darkness. I can do this. It’s Showtime.

I went into this class not knowing what to expect. I hadn’t seen a Neo-Futurist performance ever because unfortunately their current space is located on the second floor and I am a wheelchair user. I’d wanted to see a show for years, and I missed my opportunity during the special Too Much Light performances at Victory Gardens’ accessible facilities earlier this year. Our classroom and rehearsal space for our Too Much Light show at Victory Gardens was wheelchair accessible – fantastic!

The shortness of the writing exercises in class and the short performance Saturday was cool. I loved playing with different forms and thinking about “being myself” in all the pieces. There was vulnerability and truth and voice and power in that. I think that element works really well with anyone, but giving a population of people with disabilities a medium to express oneself in their own voice — that’s something that is not common.

The writing prompts and class activities were fun to do and got me thinking differently about myself and the space around me. Definitely left the class every Saturday feeling good and looking forward to more. I think it helped me write differently as well.

Snaps to the meditation and face exercises at the beginning of each class, too. They stopped me from feeling awkward and helped me shed tension. I really enjoyed the cross-disability, what each classmate brought to the class, and the way all our work was focused on art/creativity. Two thumbs up!

Reveca Torres was 13 years old when her spine was fractured in an automobile accident. She received a Bachelor’s Degree from the  University of Arizona in theater arts with an emphasis in costume design. She is a fashion designer and artist, and her artwork will be featured in Unbroken: Art After Injury at the Bridgeport Arts Center, 1200 W. 35th Street in Chicago from September 8 to September 28, 2016. You can meet the artist in person at the opening night celebration & Silent Auction at the Bridgeport Arts Center on September 9, 2016 at 6:30 p.m.