I am pleased to introduce our friend and longtime neighbor Crom Saunders as a guest blogger today. A theatre interpreter and American Sign Language (ASL) master, Crom has a M.A. in Creative Writing and began teaching ASL and Deaf Culture at several universities before getting tenure at Columbia College Chicago, where he is currently Director of Deaf Studies.

by Crom Saunders

When I saw Troy Kotsur perform as Stanley in Deaf West Theatre’s A Streetcar Named Desire in 2020, I knew, or at least hoped, he was destined for a distinguished career as an actor.

In the years since, Kotsur has held some acclaimed roles on Deaf West’s stage, and several film appearances, but nothing that garnered nationwide attention until the 2021 film CODA.

CODA was a contender for Best Picture at the 94th Academy Awards, and Troy Kotsur also was nominated for the Best Supporting Actor category. That honor was well deserved in the eyes of many film aficionados and critics. After all, Kotsur has already won several other prestigious awards (such as the Screen Actors Guild Award for Outstanding Performance, plus the Independent Spirit Award and the Critic’s Choice Award for Best Supporting Actor) for his portrayal of Frank Rossi in CODA, a feather in the collective cap of the American Deaf community.

The Oscar nomination was also the first Actor/Actress nomination for a Deaf actor since Marlee Matlin’s win for Best Actress at the 59th Academy Awards in 1987.

Troy’s portrayal of the patriarch of an all-Deaf family, except for the single CODA (Child of Deaf Adults), who makes a living as a fisherman in a small town is excellent in every aspect. His characterization, his expressiveness, and language articulation and delivery all create a very memorable role.

If only the film itself was of the same caliber.

Its win as best Picture notwithstanding, CODA is rife with negative stereotypes of Deaf people and also feel-good pabulum that does no service to the Deaf community or culture.

To begin with, CODA, a remake of the French film La Famille Bélier, relies on the well-worn premise that Deaf people do not appreciate, understand, or access music. This is used as a plot device here to create drama between the CODA character, Ruby, and her Deaf parents.

Ruby is also used as an interpreter in several situations where a professional interpreter would be more appropriate and, indeed, in the case of the doctor’s office, legally required. Again, a plot device to create friction in the family dynamics.

Several of the story scenes in CODA feel dated, more representative of Deaf experiences prior to the 21st century. The Deaf characters are at times portrayed as ignorant and bumpkins, even in contrast to the other small-town residents. The American Deaf community that has viewed the film with a culturally critical eye, if one takes a look at discussion threads in social media, predominantly are of one mind on this:

CODA is more progressive than many films with Deaf characters in the casting of Deaf actors and actresses for all Deaf roles, and giving American Sign Language the importance it deserves. On the other hand, the story feels quite retro in its representation of Deaf people’s views of the world and where they fit into it.

I don’t always watch the Academy Awards, but I did watch this year — in full support of Kotsur and the cast and director of CODA. I was hopeful (and much more confident) that Kotsur would win Best Supporting Actor for his stellar work.

And he did! His career can only grow from this point, a good thing for Kotsur himself, but also for audiences everywhere who can appreciate his skill. And by now you know that CODA won best picture, too. My hope is that win will lead to more modern, Deaf-centered films that have mainstream appeal but also give Deaf people the representation they crave and deserve.

A shorter version of this post was published on the Easterseals National Blog this past Monday.

Check out the trailer.

All the talk today in the wake of last Night’s Academy Awards show seems to be about Will Smith slapping Chris Rock. I’ll be honest—in real time I thought it might have been a bit that was supposed to be funny that went bad. But apparently not. (I also completely missed the Janet Jackson wardrobe malfunction in real-time, too. I think I was the better for it.)

Anyway, I’ve pretty much always tuned into the Oscars—it started when I was a kid and it was a family event. I used to see a lot more movies than I do now. for one thing, it’s a part-time job to sort out which movie is streamed from what service. And to get them all you’re essentially paying another cable bill. For another, the real-thing big-screen in-person experience is clogged with superheroes and CGI-ed comics. That and animation. I hate animation. Just do.

Usually, somehow, Beth and I have seen one or two nominated films but this time, zilch. So the awards were sort of a way of figuring out which we’d want to bother with (which is its purpose, after all).

The Smith-Rock incident really didn’t and doesn’t matter much to me. Two other things stuck, though. One was a gag by Regina Hall that kind of went sideways in two ways. First, she said she needed to do covid tests, which is sort of unfunny at its face. Then she asked for “volunteers” to be tested, but called up only hunky and-or dreamy men. What followed flunked on all fronts, mostly because it was just not funny. (And apparently lots of others thought this was weird, too.)

But the thing that struck me, being of a certain age, is that it was the sort of bit that I would have seen on the 60s Johnny Carson Tonight Show, or the Dean Martin show—and would be considered wholly inappropriate today. I distinctly remember a Dean Martin show where Raquel Welch was the guest star. In one skit, Martin played a doctor, and when a man came in saying he wasn’t feeling well, Martin’s doctor told the patient to go home and take an aspirin. Then Welch’s character came in and said she wasn’t feeling well. Martin told her to go in the exam room and take off all her clothes. Pretty sure that wouldn’t fly today.

I’m not particularly offended by last night or Dean Martin, save for it being sort of juvenile. But flip last night’s script to have a male host call up attractive Hollywood women, then frisk them, and, ooh boy. Will Smith and Chris Rock are an afterthought. Mostly, I don’t care, but I think it does beg questions about whether sexist, exploitative jokes cut both ways.

I’ll probably not remember any of it after a couple of days. One thing I will remember, as long as I have the capacity to remember, is when Troy Kotsur became the first deaf man to win an acting Oscar. Beth usually doesn’t stay up late, and typically she would’ve been asleep by the time that award was handed out. But in her part-time role as blog coordinator for Easterseals, which supports people with disabilities, she had a professional interest. (Indeed, it provided fodder for a post at the Easterseals blog.)

When Troy Kotsur was announced as the winner, I heard weeping. I looked and Beth was in full blown tears of joy and tears of relief. It took me, who has lived with Beth for nearly 38 years—37 of which after she lost her sight, completely by surprise.

But it shouldn’t have. For all the discussion about equality and equity, it mostly focuses on gender and skin color. Rarely is disability included.

For as long as she’s been blind, Beth has resolved to educate and advocate for people by leading as full a life as possible. To advocate by example. But that’s really freakin’ hard. On one hand, she feels the need to impress the idea that she can do anything sighted people can do. On the other, it’s not the same—and most things are harder.

In that glorious moment, I felt, deeply, something that I had always grasped intellectually. But I didn’t, until that moment, get how it felt.

Beth called our friend, who is married to a deaf man and is a sign-language interpreter, to share her joy—and our friend was also in tears. Of course, I couldn’t keep it together at this point either.

Beth went to bed and I was up alone when CODA won for Best Movie. And it happened again.

Remember that Self-Advocacy and the ADA panel Skokie Public Library presented via Zoom last November?I was on that panel along with Deirdre Keane (a teacher/librarian who was born with a hearing loss and got a cochlear implant during her freshman year in college), Michele Lee (an experienced finance professional who uses a wheelchair) and Tina Childress (a late-deafened adult with bilateral cochlear implants). That panel was successful enough to motivate an organization called Coming Together to sponsor another self-advocacy panel next week. And just like back in November, next week’s panel will be online and free of charge.

Coming Together, now in its 13th season, is a community partnership in Niles Township among organizations in Skokie, Lincolnwood, Morton Grove and Niles, Illinois that “builds bridges of knowledge and understanding among people of different groups and ages.” Each year Coming Together highlights a different topic, and in 2022 they are joining community members and expert organizations focusing on the voices, experiences and talents of members of the community with disabilities across Niles Township. And so, next week, on Thursday night, March 31,2022 at 7:00 p.m. Central Time I will be one of four women with disabilities on this hourlong free Zoom panel:

Self Advocacy and the ADA–Online Event: Personal Perspectives, Challenges, and Success Stories
Thursday, March 31, 2022
7:00 pm – 8:00 pm
Zoom Event
Register Here

What does self-advocacy look like when navigating the world with a disability? Four panelists from different fields share stories of how they’ve advocated for reasonable accommodations.

Panelists will share lessons learned and provide tips on fighting for more fair and just treatment in the workplace and beyond.

The four of us will each be given 10 minutes to tell a few personal stories of advocating for ourselves, leaving time afterwards for discussion and questions. My plan is to talk fast and describe three experiences, one a success, another a collaboration, and the third a failure:

1. Appearing at a Chicago city court after a cab driver refused me a ride with my Seeing eye dog.
2. Graduating from training to volunteer with hospice and never being paired with a patient
3. Challenges I faced when the health club I’d been swimming at closed due to COVID and no other indoor pool facility would allow my Seeing Eye dog to lead me poolside to swim laps.

The hourlong panel is free, it will be hosted on Zoom a week from today, Thursday, March 31 at 7pm cst, and you can register for it here. There’s a spot on the registration form to enter a library card #, but you can ignore that: a library card number is NOT required to register. The session will be closed-captioned, and organizers ask you to let them know in advance if you have additional access needs. You will receive the Zoom link in your confirmation email once you’ve registered, and if you have any questions about this event, organizers ask that you call 847-673-7774.

Zoom you later!

During and since the covid lockdown, I noticed what I thought was an increase in reckless, Mad Max behavior by car and motorcycle drivers. Until recently, one might have put it down to my tendency to fret about things. But apparently, it was real. From the Wall Street Journal:

Fewer people were on the roads in the early months of the Covid-19 pandemic, leading to fewer crashes overall in 2020. But the fatality rate of those incidents increased to the highest level since 2007, with the rate of deaths for every 100 million miles traveled by vehicle rising by 21%, according to an NHTSA report released Wednesday.

 In other words, there were fewer crashes but they were more deadly. Also from the article:

And that trend looks likely to continue. NHTSA projections for 2021, released in February, showed the fastest increase in car fatalities in nearly half a century. The projections indicated that 31,720 people died in vehicle crashes over the first nine months of 2021, compared with 28,325 fatalities over the same period in 2020.

With fewer cars on the road driving fewer miles, “What the hell happened?,” you might ask. From the same article:

Although the number of crashes, injuries and miles traveled decreased, fatalities increased by 6.8% in 2020 from a year earlier. Ms. Fischer attributes the numbers to drivers being more reckless on roads with fewer vehicles.

In 45% of fatal crashes, drivers were speeding, intoxicated or not wearing a seat belt, the NHTSA report said.

Something I also have noticed, anecdotally, is that drivers were more reckless on surface streets, with bands of motorcyclists riding wheelies down Michigan Avenue and DuSable Lakeshore Drive, and people in hot cars just laying on the gas between stoplights. I’ve also seen fewer traffic stops by police, a trend—that once again, anecdotally—seems to be changing. I’ve seen three in our neighborhood in the last week.

So as if that isn’t enough happy news, there’s this factoid from WSJ about 2020 fatalities:

Pedestrian fatalities also increased by 3.9%, reaching their highest number since 1989, according to the NHTSA. Bicyclist fatalities increased by 9.2%, their highest number since 1987.

So after decades of trending positively, we’ve gone backwards.

When it comes to pedestrians death, there apparently is something at work besides reckless behavior: Automotive design of modern cars. I’ve complained more than once about a Zipcar or rental car that limits how much that I, as the driver, can see. Modern cars are something of a marvel—backup cameras, traction control, self-driving. They’ve gotten worse in one way for sure: The user/driver interface is wholly non-standard. Everything from simply starting the car to operating the radio to controlling the temperature is different from manufacturer to manufacturer and even model to model within a make.

Okay, maybe that’s cranky old Mike saying “get off my lawn, cars were better then.” But the data backs me up on another pet peeve about modern vehicles: They restrict the drivers vision too much, and no number of cameras makes up for that restriction.

From StreetsblogUSA:

SUVs and pick-up truck drivers are three to four times more likely to hit a pedestrian when they make a turn than the drivers of smaller cars, a new study finds — and researchers think it’s because federal regulators aren’t scrutinizing the common design features that make it impossible for megacar drivers to see walkers passing right in front of them.

Fatal crashes involving pick-up truck drivers, meanwhile, are four times more likely to involve a driver making a left — and when it comes to right-turn crashes, they’re still 89 percent more likely. Right-turning SUV drivers are 63 percent more likely to strike a person than the drivers of smaller vehicles.

So there’s a reason I curse at SUVs more than sedans after all.

It’s not just that they’re larger and higher (though those factors likely play a role): It’s that modern designs are making it harder for drivers to see pedestrians and other things that well, they need to see to drive responsibly.

From the same article:

Image: Evo Magazine via Behance. Click to read possible solutions to the pillar problem.

In particular, the researchers behind the study cited the design of a vehicle’s A-pillars — the vertical struts on either side of the windshield that connect the roof to the body of the car — which create a pair of potentially deadly blind spots for drivers. The larger the megacar, the wider and more visually obstructive its A-pillar, a feature which automakers say is necessary to prevent rollover crashes, though experts argue they could achieve the same occupant safety goals by making A-pillars out of stronger materials, while still keeping them skinny.

Combined with the squishing of the roof and windshield for aerodynamic purposes, the larger pillars cause serious blind spots—the most extreme version from the cited study being the Ford F-150, which obstructed the equivalent of preschoolers under four feet tall.

Much of this is due to safety concerns—the bigger pillars provide more crash protection—but there are ways to improve crash protection without compromising safety. Check out this article for great images that illustrate what’s happened over the years. There will likely be more study and eventually new design requirements.

Until then, be hypervigilant as you drive or walk.

That’s Gus and me during a visit to his home in Wisconsin (photo by Mike Knezovich).

A BBC News story titled Chaos, upheaval and exhaustion for Ukraine’s disabled children caught my attention earlier this week. The piece was written by Fergal Keane, a BBC News reporter who rode with a bus full of children with disabilities and their caregivers escaping Kharkiv to safety in Poland.

The city of Kharkiv was one of the first targeted in the Russian invasion. My heart goes out to these children, and, especially, to their parents. I know firsthand how heart wrenching it is to realize you can no longer keep a disabled child safe at home and resolve to find a group home or facility where they can get professional care. But having to say goodbye to your disabled child to keep them safe from war? Unimaginable.

The bus had been travelling for thirty hours when Keane was writing his story. The journey started with car rides through war-torn Kharkiv to the train station, then a train ride from east to west to finally board the bus. The trip to the train station was the childrens’ first trip outside of a bomb shelter since the Russian invasion began. In his story, Keane writes that “shells were falling close by and the noise sparked terror in the children.”

Many of you regular blog readers know our son Gus was born with developmental disabilities due to a genetic condition called Trisomy 12p. Gus can’t talk or walk. If his food isn’t cut into bite-sized pieces, we have to feed him.

Gus communicates by crawling to whatever it is he needs. He can manipulate a wheelchair, too, and when he wants to hear music, he rolls himself to the piano. Gus laughs and sings with the tunes and claps with delight whenever he hears live music.

As a child, he loved to hold hands, especially while swinging on a porch swing. But as Gus grew bigger and stronger, Mike and I grew older. And weaker. Shortly after Gus’s 16th birthday, we realized it was time for him to move away. We placed him on waiting lists all over the country, and when a facility four hours away contacted us to tell us they had an opening, we took it.

Gus cried his entire first week away. So did we. But we knew where he was, we knew who would be taking care of him, and we can go and visit him anytime. All luxuries these parents in Ukraine likely won’t have with their disabled children.

Unimaginable.

An earlier version of this post was published at the Easterseals National blog.