Inspiration porn

pigeonholing the disabled

I learned a new phrase this week: inspiration porn. The Wikipedia entry describes it as “the portrayal of people with disabilities (or other uncommon life circumstances) as being inspirational to able-bodied people (or other common reference group), on the basis of their life circumstances.”

As is my habit, I watched CBS Sunday Morning this week. There was an interview with Emmy-award-winning performer Kyra Sedgwick, who is currently performing in the Off-Broadway comedy “All of Me” written by Laura Winters. “Sedgwick plays the mother of a young disabled woman who is romantically involved with a disabled man. “

“Correspondent Mo Rocca talks with Sedgwick about the play… and with actors Madison Ferris and Danny J. Gomez who say they like the play for not indulging in what’s been called ‘inspiration porn.'”

Ferris and Gomez both have disabling conditions. “Look at this disabled kid who scored the basket, and everyone picks him  up, and it’s like He’s so inspirational!” Or “they have a special skill that NO ONE ELSE CAN DO.”

Also, John Green, interviewed on NOCD, discusses how a lifetime of OCD inspired his novel Turtles All The Way Down. He talks about how the disease is either romanticized as something that gives you secret superpowers or freakish.

How did I miss this?

I’m late to the discussion. Back in 2014, the year she died,  Stella Young gave a TEDxSydney talk called “Inspiration porn and the objectification of disability.” The Disability Rights Advocate is attributed with coining the term in 2012.

From here: “The statement ‘the only disability in life is a bad attitude’ puts the responsibility for our oppression squarely at the feet, prosthetic or otherwise, of people with disabilities. It’s victim blaming. It says that we have complete control of the way disability impacts our lives. To that, I have one thing to say. Get stuffed.”

Bugging me

Certain stories in the media have made me uncomfortable for quite a while. I thought I was being a misanthrope. “Perhaps you’ve been scrolling on social media when you come across a short article or video about how a disabled teenager was invited to prom, how ‘bravely’ a disabled person participated in a sport or a job, or how a group of friends got together to do something charitable for a disabled person.

“In their shortest form, they might appear as memes of a disabled person doing an activity with some inspirational quote, or asking ‘What’s your excuse?” — an implied ‘If this person can do it, what’s your excuse for not being able to do it too?'”

NBC Nightly News loves these stories, especially on Saturdays. One in particular I found particularly unsettling. A teen, an assistant on the football team, got to suit up for one game, the last one in his senior year. The opposition made half-hearted efforts to tackle him – talk about taking a dive! – before he scored! The teen and his parent were thrilled, and the news anchor was happy. I found it cringeworthy and patronizing. This does not suggest that the gesture was not offered with good intentions. 

Here’s a list of inspiration porn from qi creative. 

I have seen remarkable stories, that I don’t believe fall in the category. When Chris Nikicc became the first person with Down’s syndrome EVER to run all the major marathons, I was impressed. Maybe it’s because running all of the big marathons is remarkable in its own right.

The line between inspiration and inspiration porn may seem fuzzy. Read from some of the links and I believe it will make more sense.

May rambling: medical bill

the Kremlin’s most useful idiots

Created with the Imgflip Meme Generator

I’m a Former Surgeon General and I Couldn’t Believe My $10k Medical Bill — Everyone must be able to access necessary care without fear of financial ruin

FTC chair: AI models could violate antitrust laws

Opioid Settlements and Corn: Last Week Tonight with John Oliver

Jordan Klepper Fingers the Pulse: Moscow Tools. As Vladimir Putin continues his gritty reboot of the Soviet Union, he’s getting a surprising amount of help from the party once led by Reagan. In this new special, Klepper speaks to foreign affairs experts, possible Russian assets, and the Prime Minister of Russia’s neighbor, Estonia, to find out whether Republicans have become the Kremlin’s most useful idiots.

Ron DeSantis rings in ‘Freedom Summer’ by banning rainbows

Dabney Coleman, Who Built a Career Out of Playing Jerks, Dies at 92. I was a fan of 9 to 5; Mary Hartman, Mary Hartman;  Tootsie; and especially Buffalo Bill

Richard Sherman, Oscar-winning songwriter of ‘Mary Poppins,’ Dies at 95

Bill Walton, UCLA and Hall of Fame NBA Player, and self-described Luckiest Guy in the World,  Who Became a Star Broadcaster, Dies at 71 from cancer

Morgan Spurlock, Director of ‘Super Size Me,’ Dies at 53 from cancer

America’s Most Trusted News Anchors Are…

Mayday: The race to find four children who survived a plane crash deep in the Amazon

Me, My Wife, and 3 Amigos, who happen to be former Presidents

Italian teenage computer wizard set to become the first saint of the Millennial generation

Definition: mamihlapinatapai, Yahgan for “a look that without words is shared by two people who want to initiate something, but that neither will start”

Now I Know

How One of America’s Largest Malls Avoids Scary Utility Bills and When the Coca-Cola Company Failed Math and History and Another Brick In (?) The Road and The Mystery of Pia Farrenkopf and Why it May Be Okay to Drop Beavers from Airplanes and Gone in Sixty Seconds and Stars And Stripes and Run For Your Lives

Telephonic irritation

Beverwyck is an independent living facility in a suburb of Albany, NY. Several folks from my church live there, as does my MIL. It’s a nice enough place.

When I receive a phone call from there, the caller ID usually says Trinity Health. That’s a little weird, though they are related.

What’s problematic, however,  is when I telephone a Beverwyck unit, as often as not, I reach the automated switchboard, with no way to reach who I was trying to call. This has been going on for months, at least.

This became an issue when one of my MIL’s relatives tried to call her, got the recording, and feared something was wrong. They texted me and I assured them that, yes, it’s just their stupid phone system.

If I HAD to reach my MIL, I could call the Beverwyck security office. That seems a drastic response just to say hi. Beverwyck, PLEASE fix the damn phone system.

MUSIC

FORTY-FIVE!– A Randy Rainbow Song Parody

Coverville 1488: Going Black and Blue with The Black Keys and Weezer’s First Album and 1489: Cover Stories for Jewel and The Smiths

Black Coffee – Peggy Lee

Die Fledermaus by Johann Strauss II

Shark-Shark – John Cale

For What It’s Worth – Hootie & The Blowfish (2024)

Delphinium Blue – Cassandra Jenkins

Willow soundtrack suite by James Horner

Dreadlock Holiday – 10CC

Pull the Rope – Ibibio Sound Machine
Just The Way You Are –  Billy Joel and Marlee Matlin visit Oscar on Sesame Street

I Want To Hold Your Hand –  MonaLisa Twins

Wildflowers– Tom Petty

Get Smart – Melbourne Ska Orchestra

Java Jive – the Ink Spots

Little Green – Peter Sprague featuring Aubrey Johnson

Dancing Queen – ABBA

Tighten Up – Archie Bell & The Drells. Its placement here concerns our choir director tightening up a music stand. 

‘My songs spread like herpes’: why did satirical genius Tom Lehrer swap worldwide fame for obscurity?

Emily’s Birth Book

Conscientious Birth

Emily’s Birth Book: Your Guide To A Conscientious Birth by Emily Sherman Marynczak will be the topic of the author’s talk at the Albany Public Library’s Washington Avenue on Tuesday, June 4 at 2 pm.  

I should note that the book is part essay, part workbook. It’s hefty, like a small Yellow Pages. Those of you of a certain age can look that reference up.

In a review on Amazon,  Lisa Preller, CNM writes, “Emily’s Birth Book reads like a conversation with your very own birth educator in your living room: comfortable, approachable, accepting and honest. I love the mix of personal stories with evidence. I believe it helps a patient relate and personalize their experience, fears, worries, and dreams. The format of this book is one that can be integrated into many expectant parents’ busy lifestyles. This book can be a tool for an entire pregnancy.” And beyond, I would add.

From TBM Books: “EMILY MARYNCZAK is a birth educator and mother with nearly 30 years of experience helping families navigate the challenges of being pregnant in the U.S.”

One of her clients noted: “Emily gave me the tools I needed to ask good questions and the strength I needed to change providers when the answers I got totally sucked. She helped me feel ready for the most important day of my life.  Our birth could not have been better. Emily is a rare bird: strong and opinionated but kind and gentle too. She isn’t afraid to share what she knows-to be passionate about the truth. She has such deep and abiding respect for others’ contexts. I don’t know anyone else who could have gotten through to me like she did.”

First-hand experience

A little over two decades ago, one of the families Emily helped was my wife and me. We were one of about ten couples taking a class from her on the Bradley method. This “12-week childbirth preparation course… focuses on natural childbirth without pain medication and with the support of a partner. The method was developed by Robert Bradley in 1947.”No, it’s not Lamaze.

Among other things, my wife and I wrote a birth plan. And when the ob/gyn indicated that he’d try to abide by the plan, providing us no confidence that he would, we changed doctors when my wife was eight months pregnant. We were diligent in our process, and Emily had much to do with that.

After the births of all of our children, Emily had all of the families and we compared stories.

Sidebar: Emily’s son Arlo is a pitcher for the Tri-City ValleyCats, the local minor league baseball team. He’s doing quite well thus far.

Getting Personal

When I’m 105

John Green, one of the Vlogbrothers, and probably no relation to me, created a post called  Getting Personal about Getting Personal. He talks about the transactional nature of media. John is promoting the movie Turtles All The Way Down, based on his novel, even though he has no great financial incentive to do so. He just likes, no, loves the movie.

He was asked an innocuous question by a PEOPLE magazine reporter about what keeps his 18-year marriage strong. The answer doesn’t just reflect on him but delves into his wife Satah’s life. Ultimately, he shares a story he had told before, but he mused on it first.

Likewise, last year, his brother Hank shared his cancer diagnosis, in part because he’s part of a Nerdfighter community but also because he had to cut on his responsibilities for a time.

A friend of mine is going through a very serious family tragedy. Though they have alluded to it, they haven’t said it outright, probably because writing it makes it too real.

Formerly known as

I saw Chanel Miller on CBS Mornings recently. She was sexually assaulted by Stanford frat boy Brock Turner in 2015, though he got an outrageously light sentence. She was described as Emily Doe then.

In 2016, her victim impact statement at his sentencing hearing went viral. She outed herself in 2019 when she released Know My Name: A Memoir, which I thought was gutsy.

But she was on the program promoting her new children’s book, Magnolia Wu Unfolds It All. She was happy to be there because she didn’t want to be just known as a crime victim.  And she looked joyful, which made me quite happy.

So there may be value in sharing, but that’s not going to be everyone’s choice. And frankly, I see a lot of TMI, especially online.

Where’s the line?

Almost every week, I struggle to figure out the line between sharing and oversharing. I figure if I get to be 105, I’m going to publish my no-holds-barred book, the consequences be damned. Until then, I straddle the line when it comes to other people’s privacy and my own. You just have to wait another 34 years for my tell-all.

The Civil War is not over

163 years and counting

The Civil War is not over. I’ve known this for a while, but something triggered this reaction. Doug, the Weekly Sift guy, gave a sermon at the Unitarian Church of Quincy, Illinois on May 5, 2024, titled Hope, Denial, and Healthy Relationship with the News.

I related to this part particularly.  “Today… I’m talking about an experience that I know is personal, but I’m only guessing about its universality… The experience is an intense spiraling downward that gets triggered not by anything in my personal life, but from my interaction with the news. I hear about something in the outside world, the public world that we all share, and then the walls come tumbling down.”

Frank’s trigger was Robert Hur’s investigation of “President Biden’s unauthorized retention of classified documents.” While he “found nothing that would justify pressing charges,… along the way, he took a swipe at Biden’s mental competence,” and others piled on.

“And that’s when the bottom fell out of my mood. The effect lasted for several days. I would seem to be coming out of it, but then something would remind me and I’d sink back down again… that experience, that sudden mood collapse touched off by something in the news. The something doesn’t have to relate to politics or elections. It could be about climate change, the Supreme Court or what corporate capitalism is doing to our culture or whatever else you happen to worry about.

“One minute, you’re sailing along calmly, thinking, ‘Yeah, there are problems, but we’ll be OK.’ And then you hear or see something…
And in an instant, the bottom falls out… I experience this as depression and despair, but I know other people for whom it manifests as anger: How can so many people be so stupid, self-centered, or short-sighted?”

Mine

For me, it was something that, in the grander scheme of things, isn’t desperately consequential. But it hit me. A Virginia school board votes to restore Confederate names to two schools.

There had been an acknowledgment that the war was fought over the issue of slavery. And oh, and by the way, slavery was BAD, despite the attempt of some to put lipstick on a pig; “They learned marketable skills!”

But the “school board members who voted to restore the Confederate names said the previous board ignored popular sentiment and due process when the names were stripped.” Yeah, their “heritage” was intruded upon.

So that war which killed over six hundred thousand Americans, the deadliest military conflict in US history, is still being litigated. In the Gettysburg Address, Abe Lincoln noted, “Now we are engaged in a great civil war, testing whether that nation or any nation so conceived and so dedicated, can long endure.”

Shortly after that awful war, Memorial Day was established, “honoring and mourning the U.S. military personnel who died while serving in the United States Armed Forces.”

As we relitigate voting rights and other issues of once-settled policy, it makes me feel what Doug feels, “depression and despair.” The mourning isn’t for the dead per se as much as it is a feeling that in some substantial way that I would not have expected twenty years ago, the fight continues.

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