Welp.

I’m writing as I fly home from Washington State. I’m on my third commercial flight since Covid sort of subsided. We passengers wear masks. No hassles.

I’m tired and sore and exhilarated after doing the best thing I’ve done since I used to … do things. I’m not a real hiker, but I’ve done a few. Two (now), have been with a friend who is an avid hiker. As in, if I was his age, I wouldn’t have a chance of keeping up. I’m not his age.

But between a trip to Alaska a few years ago and this one to the North Cascades of Washington, we figured out how to figure it out. I wear out, take the car home and regroup, and I drive back and pick him up at the trailhead after he’s been to the moon and back. Somehow it works.

The start of a trail

For years I’ve worked for Phius, a non-profit that has established and promotes a design / construction and retrofit standard that’s all about reducing energy consumption, reducing carbon emissions, increasing indoor air quality and comfort, and hanging in there when the power goes out. It’s a thing I’m proud of.

So, when my pal invited me to burn some jet fuel and drive with him in a rental car miles and miles in the evergreen forests of Washington State, I paused. But not for long. Sometimes it’s worth remembering why we should bother.

I love Chicago. I love living in Chicago. I love the architecture, Lake Michigan, Bronzeville, Andersonville. My Printers Row neighborhood.

I also love the humbling grandeur of nature and the wilderness. Experiencing it requires leaving my comfort zone.

My comfort zone, like most others’, shrunk the last year-and-a-half. Just leaving the apartment or the neighborhood has felt iffy. So this was hard. I’m not in good shape. I still have weird balance/equilibrium problems leftover from Covid. The latter may well have to do with the former. But at some level, it didn’t matter.

I’m just glad I went. For the record, the Mt. Baker area and the North Cascades are unsurpassed for making one feel small in the very best ways. Eons of volcanic and glacial activity make clear that the modern news cycle is a pimple on a pimple on history’s ass.

And it lays bare a conundrum: When I’m looking at the blown-out chimneys of volcanoes from  who knows how long ago, and take into account the ice age, I can wonder, well, if that can destroy us, why are we worrying about climate change?

My answer is, as George Carlin proclaimed, “The planet is fine, the people are fucked.” I ain’t bothering with Phius for the planet. I’m doing it for people.

If you want some proof of the beauty of humanity, take a hike in the Mt. Baker area. People from Seattle, Oregon, Florida, Mississippi … Chicago, Washington, D.C … there were no bumper stickers, just reverie for the experience. A common experience. And we talk, and we smile, and we’re glad to have met one another.

It’d be a shame if these good people and their descendants left before they had to.

With that, here’s a poem by William Stafford that was posted at a scenic vantage point in the North Cascades National Park:

Please click and read.

July 26 is the anniversary of the Americans with Disabilities Act, and this year I’ll be celebrating it with the fishes.

The Shedd.

Chicago’s Shedd Aquarium contacted me last month to let me know about new ticketing kiosks with accessibility features they’d be installing soon. “We are hoping you’d be interested in assisting us in testing out the accessibility functions of our kiosks,” they wrote, explaining the process might require two separate visits. “We might only need an hour to start, and then we would probably bring you back for another session, after we make any of your recommended revisions.”

Of course I said yes.

It only dawned on me this past week that the day we chose to meet –this Tuesday, July 27 –is just one day after the anniversary of President George H. Bush having signed the Americans with Disabilities Act into law. In the spirit of that groundbreaking legislation, the Shedd Aquarium never expected me to volunteer my time for this project. They never assumed I am a disabled person sitting around at home with nothing to do, they actually respect my experience and will pay me for my work.

I’ve been to the Shedd many times before – attended the dolphin show with nieces and nephews, spoke on disability-related panels there, attended a wedding there, went multiple times to hear combos perform at “”Jazzing at the Shedd.” Lately I’ve been toying with heading over there sometime to maybe, just maybe, touch a stingray. Saying goodbye to you all now to ponder what a freelance accessibility consultant wears to a gig at a cool place like Chicago’s Shedd Aquarium. Will leave you with this info about the option to touch a stingray there:

How do you think a stingray feels? Soft, like a pillow? Squishy, like a marshmallow? How about scratchy, like sandpaper? There’s only one way to find out — at Shedd’s Stingray Touch experience.

Dip your hand into a shallow tropical pool and discover the unique texture and movement of a school of stingrays as these fascinating fish glide through the water in Shedd’s first outdoor environment. You’ll also learn how we care for all of the stingrays living at Shedd and how your actions can protect them in the wild.

Kudos to the Shedd for respecting the needs of visitors who have disabilities, and also for their continuing efforts to leave everyone who visits with ways to help the environment. Looking forward to my trip over there Tuesday.

We have kind of an aural household. As in, there’s lots of sound most of the time. It’s live radio, streaming radio, or the squawking of Beth’s computer. It’s Siri on Beth’s iPhone reporting her blood sugar levels, or the time of day, or the current temperature and weather forecast.

Never out of style.

I guess that’s predictable given Beth’s predicament—sound is more important to her than the average bear. But that’s not the whole story.

The world, awash in a sea of visual media, seems to have gone audio crazy. There’s more audio content than ever. That’s not all good, because every Joe and Jane Schmo seems to have a podcast … whether or not they have anything to offer. And really, aren’t podcasts essentially TiVo-ed radio?

As someone who was present at the creation of the World Wide Web, I’m completely awed by the staying power of radio. TV didn’t kill it. The Internet didn’t kill it. Streaming just extends it. Somehow, it thrives.

Beth uses Alexa to stream a great station (KOZT) we found when we visited Mendocino, California a few years back. And to the fantastic New Orleans jazz station, WWOZ. Over the old-fashioned broadcast airwaves, Beth never misses Fresh Air on WBEZ, our NPR station. As a result, she’s always ahead of me in terms of popular culture and literature. Wait Wait … Don’t Tell Me is a Saturday morning habit, though we sometimes waver and tune in Saturday Morning Flashback on WXRT.

I became addicted to WSCR over the pandemic. I stayed away from it until then (we called it sports hate radio)—but the on-air people humanized themselves during the pandemic. While none of the sports teams were playing, they began talking about, you know, things other than sports, because they had to. And they were good at it. I’m kinda missing those times. Now it’s back to spending hours talking about the same sports non-story ad nauseum. (Who are the Cubs going to trade? Are the Bears moving to Arlington Heights? I really don’t give a rat’s ass.)

My guess is that radio’s appeal is something like reading’s appeal. I think more thought has to go into writing or audio production than to producing TV, and as a result, it’s a richer experience than watching flickering images. Of course, there’s plenty of crap on the radio, too, especially the hateful political monkey hosts.

But if I want a quick hit of news, I can always tune in WBBM and get the story in a quick 30 minutes, without some freakish TV footage of a bear running loose in San Diego or the like.

A toast to Guglielmo Marconi, and long live the radio!

I’m pretty sure ableism wasn’t even a word when I lost my sight in 1986. Don’t get me wrong here: ableism existed 35 years ago, but back then we just called it discrimination.

The 31st anniversary of the Americans with Disabilities Act is coming on July 26, so now seems a good time to acknowledge the discrimination that existed before the ADA…and how it still exists today. So what does “ableism” mean, exactly?

This past year and a half, young people have taught me a lot about social justice, equity, and inclusion through their participation in marches, their Zoom talks, webinars, YouTube videos, and speeches. When it comes time for me to learn more about ableism, I am fortunate to have a young expert to go to: my 15-year-old friend Anja Herrman. I came to know Anja very well when she was nine years old and learning at home during a casting program (casts on both legs from her hips down to her ankles). She was schooled at home for two months back then, and I was her at-home writing tutor. Many of her completed assignments were published as guest posts here on our Safe & Sound blog, and you can read this poston the Easterseals National blogfrom 2016 to learn how and why she had all her posts back then published under the pen name DJ Mermaid. A high school student, published writer and disability activist now, Dj Mermaid goes by her real name.

Anja K. Herrman was the winner of the Primary Division Playwright Discovery Program at the Kennedy Center in 2019, and a keynote speaker at the #EachforEqual International Women’s Day Event in 2020. Her work has been featured in Magnets and Ladders, Input Magazine and the Huffington Post and is also forthcoming in the Disabled Writers blog.

Anja uses a power wheelchair to navigate her public school, and the stories she recounts in An Essay published in Rooted in Rights last month pretty much spell out what ableism is all about. Two examples:

1. She had to advocate on her own for automatic door buttons to be able to access the restrooms at her public school independently.
2. When the school elevator broke down, the school administrator in charge simply shrugged and said there was “nothing he could do.”

The broken elevator was particularly problematic, since many of Anja’s classes occurred on the second floor. The ableism comes out loud and clear with the administrator’s answer to the problem at hand. Direct from Anja’s writing:

The school’s genius (I’m being sarcastic here) solution while they were waiting for it to be fixed was to have me sit in an empty classroom without my peers during instruction time doing independent learning (also known as busy work).

Anja had to explain to the principal why this wasn’t suitable. “I wouldn’t be with my peers,” she writes in her essay. “And I was not getting educated to the fullest extent of the school’s duties.” The principal attempted to placate her, she says. “But basically he told me there was nothing he could do.”

So there’s the ableism: dismissing Anja’s needs, deciding that keeping the other students upstairs with their teacher took precedent over her educational needs. You’ll have to read her Rooted in Rights essay to find out what Anja did to advocate for herself here, but I’ll tell you this much: a week later, Anja’s classes were moved downstairs so she could participate.

Anja addresses the idea of allyship in her essay as well, acknowledging that being an ally to the disability community is “a complex dance of knowing when to speak up and when to keep quiet so disabled people can share their experiences.” In the essay she recounts a conversation with her high school theater director about making her costume accessible — tiny buttons don’t work for her. Everything was going along just fine until the director referred to Anja as differently-abled. “I started to do my whole spiel about how using that euphemism is offensive,” She writes. “It erases my identity as a disabled person…it forces me to conform to the ableist view that ‘disability’ is bad and we should avoid naming it at all costs.” Her director’s response was a pleasant surprise for Anja. “I get it, “ he told her. “Your identity is yours to name, and I’ll refer to you the way you choose.”

“It may not seem like much,” Anja writes, “but that was an example of allyship to a student in the disability community…my director listened to my concern and then chose to respect me, an expert on my own disabled body and identity, instead of doubling-down on his comment.” I learn a lot about ableism and allyship from my young talented writer friend Anja. To encourage you to read her Rooted in Rights essay in its entirety, I’ll leave you with one last wonderful excerpt:

Teachers, take note: being an ally doesn’t always have to be some grand gesture; something as simple as listening and changing your stance on an issue could be just as meaningful. But anyone can become an ally — even you! — by taking the time to listen.

Luis’ Saucy Boyz Clothing Instagram account provides a window on his business and his spirit.

This week I learned that one of the 16 identified victims of the Surfside collapse was only 26 years old. From the Miami Herald:

Luis Bermúdez, a 26-year-old man from Puerto Rico and 7th floor resident of Champlain Towers South, was killed in the collapse, according to family members who announced his death on social media.

Struck by how young this victim was, I kept reading. Three or four paragraphs in, I learned that young Luis Bermúdez had muscular dystrophy and used a wheelchair to get around. His mother and brother are still missing.

Luis ran his own clothing business, Saucy Boyz Clothing, that sold apparel featuring his sketches of his favorite food: sushi. While acknowledging on social media that his condition made it difficult to use his hands and fingers, Luis said he was “persistent” when it came to finding a way to make his art and described himself as a man with “a big heart” and “happy to live another day.”

My initial interest in this Miami Herald story was simply to learn what sorts of people lived – and have died – in that Miami high rise. Tourists? Retirees? Snow birds? I wasn’t expecting to relate to any of them. But now I do.

Being diagnosed with a chronic disease or disability when you are young can spark a sense of urgency in you, motivate you to squeeze in a full life now, take advantage of opportunities that come your way.

Starting your own clothing business in your twenties, for example. “Because of my attitude I have achieved my dream,” Luis shared on his Instagram. “The purpose of these designs is to share my art with the world and let them know that despite whatever impediments they may have, they can achieve what they set out in their mind and heart. There are no limits.”

I can also relate to Luis Bermúdez’ parents. Mike and I have an adult son who uses a wheelchair, and when the Miami Herald reporter interviewed a family member about Luis, they described him as “the light of the eyes of his father.” Those of you who have followed the Mondays with Mike feature on our blog know about Mike’s devotion to our son. Gus is the light of Mike’s eyes, and shortly after finishing reading the Miami Herald story yesterday, I made our train reservations to Wisconsin. We’ll be celebrating the Fourth of July with our son there.

And thinking of Luis and his family.