disabilities Archives - Ramblin' with Roger

The grumpy post

more alike

Every once in a while, I need to write a grumpy post. This is a piece about things that make me irritable. The parameters are not directly related to politics. However, I will argue that everything is politics.

ITEM: When there’s a health disaster of some sort, such as the E. coli outbreak in some McDonald’s in Colorado and surrounding areas, or Boeing having a series of mechanical difficulties, such as a door blowing off, there’s always that language. Lawyers probably wrote it. “We take safety seriously” or “Safety is our utmost concern.” I give McDonald’s a pass on their bad supply chain onions. But when Boeing says that, I laugh. Oh, please.

ITEM: I have heard the mantra, “We are more alike than we are different ” a lot this season, so much so that it has become a cliche. Nora O’Donnell says it frequently on the CBS Evening News. I suppose this saying is a dilution of a Maya Angelou quote: “We can learn to see each other and see ourselves in each other and recognize that human beings are more alike than we are unlike.”

The first version is a platitude that allows one to say we’re all the same under the skin while ignoring or denying the notion of racism, sexism, homophobia, and the like. The other says we can work at it; we must learn to see each other. These are not the same sentiments at all.

Related: James Baldwin noted, “We can disagree and still love each other unless your disagreement is rooted in my oppression and denial of my humanity and right to exist.”

Not So Great

ITEM: A Facebook buddy wrote: “‘That’s a great question’ has become the de facto preamble to every response, in every interview, everywhere.” It’s not just interviews. It appears in a commercial for house gutter products in a faux Q&A situation.

Somebody told me a long time ago that when you say to one party, “That’s a great question,” and you don’t say that every single time, it suggests that those other people’s questions aren’t all that good. The truth is that generally speaking, almost none of these questions are all that particularly good, let alone great.

ITEM: My wife drove us through a grocery store parking lot in the proper lane. Somebody within a parking space started pulling out in front of us or into us, so my wife beeped her horn, ensuring we didn’t have a collision. The face of the other driver looked infuriated. After we went by, they came out behind us and lay on the horn. I don’t know why this bothers me, because bad drivers.

ITEM: I got this pin: “Young people are the solution, not the problem.” The former may be partly true, but it seems that the people who created the problem should help fix it.

When I went to Chautauqua in July 2024, environmentalist Bill McKibben talked about how old people can afford to get arrested more than young people because the consequences are less for them. They also have more money and political power.

This is JEOPARDY!

ITEM: In JEOPARDY! news: “The 2025 ToC will consist of 21 players, the top 20 champs from last April until December, and the winner of a 15-contestant Champions Wildcard. Also, like in past years, the ToC will immediately follow a Second Chance Competition for non-winners and a Wildcard for brief winners who didn’t make the cusp.”

Another Second-Chance thing? I got it when they did this during the writer’s strike. Now, it allows fewer people to get their chance on the Alex Trebek Stage.

ITEM: This sign is in front of 110 State St. in downtown Albany, NY, and I don’t see its purpose. If you carry many packages, does this mean you can’t use it because you’re not disabled? If I am using it, does this mean that I have to identify myself as disabled? It’s weird.

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.

Patient Portal should be ADA compliant

508 compliance

My old friend Catbird asked me a question.

Hi Roger— When you need to get information from your medical provider(s), how do you do it? Phone? Email? USPS? Online system?

My only access is through a “patient portal” that is “protected” by Captcha. I can’t use a captcha because I have a visual deficit, and I am trying to find out how widely it’s used to guard medical information (and even access to my provider). The captcha workaround is widely known, so at best, it’s only an illusion of security or privacy. The best I can do is take my own notes and try to remember to ask for a paper copy of any results before I leave a medical visit.

Thanks for any info or perspective.

It wasn’t THAT long ago (was it?) that I could call my primary physician’s office, and usually within two hours, my doctor’s nurse, who knew me by name because we had such a long-term relationship, would call me back.

That’s gone by the boards, as virtually every transaction I have is on my cellphone or the portal. The cell to acknowledge appointments and check-in. Some places don’t want you inside until they text you to avoid overcrowding; COVID accelerated this tremendously. I finally grudgingly embraced the cell phone out of necessity.

Everything else is on the portal. Or portals. I have to access more than one. While most of my providers, for good and for ill, are affiliated with one entity, there are outliers, such as my podiatrist, dermatologist, and allergist, who are not. My computer knows who I am vis-a-vis these gateways; when it inevitably dies, I’m probably screwed.

ADA

It occurred to me that the offices would be subject to the Americans with Disabilities Act. Indeed, per Dreamscape, THE IMPORTANCE OF THE TITLE IV REVISION TO MODERN LIVING: “The Title IV amendment came in 2008. From telephonic communications to the internet, television, and other digital services, it was apparent that Americans with disabilities needed special accommodations. Everyday tasks such as surfing the web or watching television ranged from inconvenient to impossible with hearing, vision, or other physical impairments.

“Thus, Title IV set a new standard for telecommunications. Through it, certain requirements came into effect for digital communications, including closed captioning and guidelines for web accessibility. These guidelines [which are very wonky] include site navigation, alt text for photos, and other information shared through web content or applications.”

There should be accommodations made. For instance, the Equalweb page suggests that “the Visually Impaired profile automatically activates the Screen Reader Adjustment function, the Low and High Saturation and Contrast modes, and the Image Descriptions, Magnifier, Reader Font, Highlight Links, Highlight Headers, and Text Magnifier functions for individuals who live with visual impairments.”

More on point from the AHIMA Foundation: What To Do If Your Patient Portal Is Not Accessible. “In March 2022, the U.S. Department of Justice released guidance under the Americans with Disabilities Act (ADA) on how state and local governments and businesses open to the public (such as hospitals and healthcare organizations) can make sure their websites are accessible to people with disabilities.

“In the context of patient portals, it’s the hospital’s job to ensure their portal is accessible to all patients….

Things to fix

Reasons Why Patient Portals and Other Health Websites Might Not Be Compliant with ADA

Poor color contrast. People with color blindness and other disabilities related to vision ─ such as diabetic retinopathy ─ may have difficulty reading text if the text color is similar to the color of the background.
Lack or poor alternative text in images and graphics. If there is no alternative text, or alt-text, in an image or a graphic, someone who uses a screen reader will not be able to know what information is in the image or graphic.
No captions on videos or transcripts for audio. Someone who is hard of hearing or blind will not be able to know or have difficulty understanding information that is in a video or podcast, for example.
Inaccessible online forms. There need to be clear labels on forms for people who use screen readers. Having clear instructions is always helpful.

Patient Portals and 508 Compliance

“Any hospital or health clinic that receives federal funding also needs to be compliant with Information and Communication Technology (ICT) under Section 508 of the Rehabilitation Act and Section 255 of the Communications Act.

“If a patient portal is inaccessible to you or someone you care for, look for a statement of accessibility on the hospital’s website. Typically, it’s linked at the very bottom and includes a phone number and/or email address where you can report any issues you are experiencing.

“Requesting changes or filing a complaint regarding the inaccessibility of your patient portal should be made directly to your healthcare provider and/or hospital. They may be able to help you and address your concerns more timely than filing with a federal agency.

“Should you not receive a response after contacting your provider and/or hospital, you can file an online ADA Complaint with the Department of Justice, Civil Rights Division.”

I wonder if one reasonable accommodation could be talking to you on the phone and mailing stuff to you if they can’t quickly fix their website. I put it as a short-term solution, not a permanent fix.

One last thing on the topic of medical care. My primary physician used to be in a partnership. Then, the practice was gobbled up by Big Med. Since then, her office has moved FOUR times, including this month. This most recent change means it’ll take me two buses and an hour to get there. [Sigh.]

Christopher Reeve would have been 70

Paralysis Research

Lots of people have mused why Christopher Reeve, born September 25, 1952, was the perfect Superman. Part of it is that perfect early scene:
Supes: Easy miss, I’ve got you
Lois Lane states: You–you’ve got me? Who’s got you?
And it’s that little chuckle that I loved.

But also, he was my favorite Clark Kent. If you don’t accept Clark as distinct, it’s difficult to buy the secret identity of the superhero. I saw the first two films, and even though the second film is a lesser effort, it was not the failure of the actor in the lead. Here was his workout regimen.

I didn’t see him in much else. Remains of the Day (1993) and Noises Off (1992) I liked. Also Somewhere in Time (1980), during which Jane Seymour says she and Christopher Reeve were “falling in love.”

Then, “on May 27, 1995, the actor injured his spinal cord after falling off his horse in an equestrian competition… The blow left him paralyzed from the neck down and forever in a wheelchair. Reeve was only 42 years old. The doctors took away any hope of improvement, assuring him that it was ‘impossible’ to recover movement…

“As The New York Times revealed, if the actor had fallen one centimeter further to the left, he would have died on the spot. If he had done so to the right, he would most likely walk out with less than a concussion.

“Reeve reappeared in public at the 1996 Oscar Awards, a surprise remembered as one of the most exciting moments in the history of the awards.” I’m very sure I got a lot verklempt at that moment. Christopher quipped, “What you may not know is that I left New York in September and just arrived in Los Angeles this morning [March 25, 1996].”

The Foundation

The above paragraphs were from a piece on the Christopher and Dana Reeve Foundation, a nonprofit founded in 1999.

Even before then, both Christopher and Dana were involved with activism. “In the years following his injury, Christopher did more to promote research on spinal cord injury and other neurological disorders than any other person before or since.”

As the AmeriDisability page notes: “Originally created in 1982 in response to the injury of Henry Stifel, the Christopher and Dana Reeve Foundation – first conceived as the Stifel Paralysis Research Foundation, a community-driven nonprofit dedicated to curing spinal cord injury (SCI) – marks its 40th anniversary (2022). Over the last four decades, the Reeve Foundation has evolved to become the premier national, paralysis-focused nonprofit organization working to address a dual care-cure mission – providing free, comprehensive resources to help those impacted by SCI and paralysis as it advances the most promising scientific advances toward cures.”

Check out the Give.org page.

The most recent Charity Navigator listing for the Foundation gives it a “score is 87.31, earning it a 3-Star rating. Donors can ‘Give with Confidence’ to this charity.” Note that “this score represents Form 990 data from 2019, the latest year published by the IRS,” because the agency “is significantly delayed in processing nonprofits’ annual tax filings.”

Passing

In 1998, Reeve produced and starred in Rear Window. It is, of course, a remake of Alfred Hitchcock’s great 1954 film. “He was nominated for a Golden Globe and won a Screen Actors Guild Award for his performance.” Of course, it doesn’t compare with the original. But one scene actually terrified me. When the villain disconnected the Reeve character’s breathing tube, it was impossible for me to separate the role from the guy playing it.

On October 9, 2004, Reeve went into cardiac arrest after receiving an antibiotic for an infection. He fell into a coma and was taken to a hospital in Mount Kisco, New York. He died on October 10 at the age of 52, quite possibly as the result of an adverse reaction to a drug, something he had experienced in the past.

Dana Reeve married Christopher in 1992. Less than a year after his death, Dana announced that she had been diagnosed with lung cancer. “She had never smoked but in her early career often sang in smoky bars and hotel lobbies.” She died on March 6, 2006, at the age of 44, at NYC’s Memorial Sloan Kettering Cancer Center.

But their work lives on.

We should act for Americans with disabilities

30th anniversary of the Americans with Disabilities Act on July 26

The 30th anniversary of Americans With Disabilities Act is coming up on July 26. That is when President George H.W. Bush signed into law the act, “which prohibits discrimination against people with disabilities in employment, transportation, public accommodations, commercial facilities, telecommunications, and state and local government services.”

The law has allowed more people to contribute economically and intellectually to society. In 2019, 19.3 percent of persons with a disability were employed, the U.S. Bureau of Labor Statistics reported.

For whatever reason, this has been one of those issues that I’ve always had an interest in. When I was working as a librarian, I often took the ADA questions. In the main, the need to make “reasonable accommodations” has become easier with technological advances.

We need to be more accommodating

I am sure I’ve complained about how people make it difficult for those with handicapping conditions to get around, including in my neighborhood. The people who park their cars across the sidewalk, or block the crosswalk, for their own convenience tick me off. They make it difficult for people who are blind or are using wheelchairs, canes, or walkers to traverse.

A blind woman I know needed help doing her laundry recently. Usually, there are machines in the building, which she was quite capable of using. But the landlord is switching them out and the delivery of the new washers and dryers were delayed.

So I walked her pretty much kitty-corner from her house to the laundromat. The first thing I noticed was that drivers are not all that considerate of a woman walking across the street using a cane. On both legs of the trip, automobiles got WAY too close to us. She says it happens to her all of the time.

Then we go into the laundromat. I hadn’t been in one in years. back in the day, the washing machines had specific spaces for the quarters, so you can tell how much it cost. The downside happens when the laundromat owner wants to raise prices.

Now they just have slots for the quarters. But how many? The front loaders were $3.25 each, the top loaders $2.25, according to the digital display. But there would be no way for a sightless person to know that. The dryers were 25 cents for seven minutes, and the start button was whether you wanted the temperature to be high or low.

It’s good for me to experience the world in ways that help me understand what others go through.