The WordPress Daily Prompt for August 21 asks, “If money were out of the equation, would you still work? If yes, why, and how much? If not, what would you do with your free time?” __________________________________
I have my final pay stub somewhere around here, detached long ago from the check whose sum it explained. It dates from late June 2010 and I should bronze it like a baby’s shoes.
As it is for me with many other aspects of a common American—well, not just American, human—life, my relationship with work is, um, not uncomplicated. Off the top of my head, from age 15 till 40 I held 14 different clock-punching jobs from almost as many employers, with a couple employers that hired me more than once. Not included in the list is the newspaper reporter job I quit via fax machine the morning of day one, because I really am a terrible employee and I guess I wanted to prove it quickly, and the one time I was paid for an acting gig (onstage with a cardboard box on my head and a ukelele in my hands—it was a little avant garde, and getting paid five bucks made it even more so).
Life for me for the last four years has been nothing but free time, however—yet I have never been quite so productive. I am the person for whom this question was written.
I have not been another person’s employee since the summer of 2010, when I was asked to leave my last job, which I had not enjoyed very much for three years and nine months, because I had not enjoyed it very much for three years and nine months too many. The manager and I decided that I no longer needed to consider him my boss and he no longer needed to consider himself my boss. On that much we agreed, so we parted company and even deleted each other from one another’s Facebook. It was that serious a firing.
The symptoms of my diagnosis had been prominent for most of the three years; I started walking with a cane in 2007. When the symptoms of adult spinal muscular atrophy first showed, they came suddenly. Only recently have I learned that this is a common experience among people with neurodegenerative diseases. When walking becomes difficult—in my case because the nerves that had been sending (ever dimmer) signals to my legs (which had started to atrophy from receiving ever dimmer signals and thus were not being asked to work)—the end of normal walking comes as if everything had been just fine one day and the next day as if one’s shoes had been nailed to the ground or one’s co-workers had painted the floor with superglue. (I must not have liked the job very much, if I thought such a prank was possible!) It is sudden and scary when the progression of deterioration is undetected and even undetectable until the day it is completely not.
Since my last job was not a high-paying one and did not offer free or simply less expensive health insurance, I had none. So I neither spoke with anyone about my developing deterioration, nor did anyone suggest I do so. But being suddenly unemployed (so very unemployed my boss had unfriended me, please recall) meant I could get poor people’s health insurance, Medicaid. (This is before the Affordable Health Care Act, which also has in fact benefited me.)
With Medicaid came the, “Hey, doc, what gives with my legs?” conversation, and, eventually, the answer(s). With the answers came Social Security Disability, which is my sole income as of right now. If I had had insurance at an earlier date, perhaps I would have received the diagnosis and declaration of disability earlier and been able to leave my last employer on better terms. Entertaining such hypotheticals is a highly un-useful pastime, I find.
My barber asked me recently, “What do you do?” And I replied, “I am a retiree.” As I have written elsewhere, I am an alcoholic in recovery, sober several years, and I am living “Mark’s Life, Version 2.0.” The universe has afforded me a second life (not the online virtual community, a real second life), and the opportunity is not being wasted. I am writing, every day, on a schedule of my own fashioning, speaking with and sometimes counseling people.
There are three jobs every person in recovery thinks of pursuing, as I certainly did: becoming a counselor (but the hours of training are arduous), becoming a truck driver (perhaps because a desire to escape partly fueled the addiction and does not leave), and, after being told by enough people, “You oughta write a book about your stories,” a writer. Luckily, I already was a writer.
From Elvis Costello’s 1983 album, Punch the Clock, “Everyday I Write the Book”:
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Each one of us is a part of an interest group. This does not mean each of us must carry out the duties of being an official representative of said interest group, but, for example, I might be the only Jewish person you know. As such, I try to be a good guy and hope that this represents.
(I have been that one before, actually—when I lived in the Midwest—and had some fun with it. Not that there are not Jewish people in Iowa, but one couple that I got to know had not met one or claimed to have not. Which makes me a member of another special interest group: I may be the only Jewish person you know who was the first Jewish person someone met!)
I am male, middle aged, half-Jewish, half-Baptist, an alcoholic in recovery, tall, thin, and I have a disease that is disabling me. It might be Friedreich’s ataxia or it might be and probably is spinal muscular atrophy, type 4. Do any of these things merit me tapping on your shoulder and requesting attention from your charitable impulses? Or your attention at all?
The WordPress Daily Prompt for August 20 asks, “The internet has recently been swept up by the ALS Ice Bucket Challenge. Is there a cause—social, political, cultural, or other—you passionately believe in? Tell us how you got involved—or why you don’t get involved.” The Daily Post helpfully provided a link to the ALS web page, but I also linked to an article explaining the “ice bucket challenge.”
I have seen this meme almost as frequently as I have seen videos of people dumping water on their heads. It is an old photo and is often repurposed to make fun of Americans.
This will be remembered as the summer of the “ice bucket challenge,” and after a few weeks of popularity, the backlash has begun. The plethora of videos of people, famous and not, giving a 15-second speech about amyotrophic lateral sclerosis, also known in the US as “Lou Gehrig’s Disease,” and then dumping a bucket of ice cubes and water on themselves “for charity” has led to memes attacking the popularity of the challenge, accusations of “slacktivism,” and some generalized online booing. When we look back at the ice bucket charity awareness campaign, in our heads we will hear someone say, “2014” and “I wonder whatever happened with that? Did they cure … what was it about again?”
Amyotrophic lateral sclerosis (ALS) is a rare disease. There are almost 7000 rare diseases, so approximately 30 million Americans, or 1 in 10, suffer from, cope with, accept, or fight against (sometimes all of these in a matter of an hour) a rare disease. A rare disease, as a concept, is not such a rare thing. If you know 10 people, you know a person with one. Multiple sclerosis and Alzheimer’s are also common rare diseases, a phrase I wish did not exist. And then there are the many, many forms of cancer, a disease that one can not wish—or work—hard enough to make it become rare.
It is not precisely known who started the ice bucket challenge or when, only that it started very recently, in 2014, and it was not about one particular health issue awareness charity. An early version, in New Zealand, was about cancer. (Because it is winter in New Zealand right now, the web site has a warning about doing the challenge outdoors.) A couple people in the United States adapted it to raise funds for ALS research and awareness. It took off from there.
Most of us are not medical researchers but most of us have known or do know someone with a illness or condition. Whether it is cancer, heart disease, or a rare disease, chronic or life-altering illness touches many of us and thus many of us know the powerless feeling that comes upon hearing such a diagnosis. We want to do something about it but we are not doctors. It is frustrating. I have seen the look in my mother’s eyes when talking about my disability. She hates the idea that I have something that she can do nothing about, like cook some chicken soup.
So we raise money for the charities that have been established to support the researchers who might possibly find the cure for the disease that affects your family member or friend. Almost every disease has a support community and researchers devoting time to study—at minimum—palliative care, or to even find cures. And that is where any controversy lies: How do I know that the dollar I donated is going towards a cure instead of merely buying lunch for the people who answer the phones and take the donations? The answer is, you don’t. As long as a charity makes its expenses public, I know that some of my donation may be buying lunch. I hope they are eating healthy. But I also know that some of my donation may be paying for the science-y stuff like test tubes, beakers, and a cure.
As with anything that has become popular suddenly, like a dance craze or a catch phrase, sometimes some part gets overlooked. Is everyone who is posting a video of themselves getting wet and icy explaining how to donate to the charity? Is every video participant in fact donating to the charity that they are raising awareness for? Some are not. Some have misinterpreted the whole thing as, “Get wet to not donate and challenge others to get wet, too.” That is “slacktivism,” but even slacktivism serves a public awareness purpose. There is no such thing as the social media police, even if I wish there was, so some people are simply showing off that they do not know what they are doing. The internet is good for that. The dollar that they do not spend on the charity they are not raising funds for is not a dollar that is making people sicker. They are merely getting wet.
ALS is a progressive, neurodegenerative disease that affects the nerve cells in the brain and spine. These cells deteriorate and die and stop sending messages to muscles anywhere and eventually everywhere in the body. The muscles atrophy and paralysis follows. It can strike at any age, and it can kill quickly.
Here is where my personal special interest group membership comes into play: The motor neurons in my spinal cord are deteriorating and dying and messages are no longer being sent or received in the muscles in my legs, which are slowly atrophying. I have a form of spinal muscle atrophy called “adult onset” or Type 4, and there are many links between SMA and ALS. They are siblings in the motor neuron disease family.
The majority of SMA patients are infants and children, so the majority of SMA patients are voiceless. (Here is a great blog written by a passionate activist with SMA: “Living with Spinal Muscular Atrophy.”) SMA is the number one genetic killer of infants. Few of us are adults. Those of us who are adults owe it to the children born with this disease to help find a cure. Any progress made in finding a cure for SMA will most likely be applicable to also finding a cure for ALS, and vice versa. They are that close in their origin and symptoms.
So if and when someone on Facebook or Twitter challenges you to dump a bucket of ice water on your head for charity, and believe me, they will, take up the challenge, mention ALS and SMA in the same breath, include the websites you want to benefit (ALS and SMA), and dump the water. And then donate to one or to both. Don’t be a slacktivist. Chris Mosher, below, used the challenge to bring attention to both diseases:
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The WordPress Daily Prompt for August 13 asks, “When was the last time a movie, a book, or a television show left you cold despite all your friends (and/or all the critics) raving about it? What was it that made you go against the critical consensus?” __________________________________
De gustibus non est disputandum. Loosely translated this means, “There is no reason to argue about matters of taste.” There is no fighting over subjective personal likes or dislikes such as colors or sounds. You can not successfully argue me into liking certain smells. I can not punch you hard enough to like what strawberries taste like. Being ticklish or not being ticklish is not an example to offer in a friendly “nature v. nurture” debate.
Comedy does not fall under the “can’t argue (or explain) taste” category of conversations. It is not a subjective taste. At worst, comedy falls in the “agree to disagree” territory—when it fails to entertain or amuse or even offends. But “agree to disagree” is a phrase that at least implies an acceptance of the possibility that opinions can differ. At best, the discovery that you and a new acquaintance share a sense of humor can seal the deal on a friendship for life. I do not know if you find what follows funny, but if you do, consider us friends (if you do not, that is fine, too; it is simply that these 16 seconds might be the quickest way to determine if you and I are potential friends) (yes, I am exaggerating):
Comedy often offends. To a degree, all comedy is offensive, as it shakes up and toys with perceptions; if you do not find the “Fish-Slapping Dance” funny, it may be because you find the waste of intellectual effort offensive. Or perhaps fish jokes generally turn you right off. “How is this funny?” becomes the same question as “Why is this funny?” “Why is this on my screen?”
Usually, “How” and “Why” are not the same question, not even related. How a car functions (fuel, pistons, wheels, tires, go go go) is not the same question as why I am using it (to go buy more fuel to drive somewhere else … um, I may need to look into this vicious cycle). The “Fish-Slapping Dance” actually can be seen as a depiction of the “How is this funny?” conversation. Michael Palin, the “little fishes,” dances the question, and then John Cleese, the “big fish,” delivers the only possible retort. “It is or it is not.” Splash.
“Because it is” is sometimes the only reply, but someone who replies with this is merely saying “Because it is funny to me,” as if to say that one can not argue about taste. That is true, but funny is not a taste. (“Funny tastes” might be a future “Daily Prompt.”) One who says this is falling prey to the logical fallacy that if something is amusing to him or her, and he or she rhetorically concedes that while YOU may not find it amusing (thus covering both bases), you, the non-amused one, are wrong. Wrong. And then you may find them theorizing that you have something rigid intimately involved with your colon. “Agree to disagree!”
So whose perceptions ought to be offended? When can offense be something that even the offended party finds amusing? I do not know if there can be a “unified field theory of offensiveness.” Or comedy. Myself, I am not a fan of “cringe comedy,” television programs or films depicting socially awkward situations in which two parties are in conflict and one party resides in an obviously superior social strata, yet they are the aggrieved party, and we the audience are supposed to laugh at the supposed aggressor, who may simply be a character depicted “doing their job.”
When all the roles are depicted as equal, scenes of bullies getting their comeuppance or returning the comeuppance can be sublime:
Poor Edgar Kennedy! Poor Harpo! Poor Chico! And they are all bullies! All three take turns being the most creatively worst person. They kick each other and destroy hats for no reason other than that is what no one in these positions ever does. They are equals. The comedy lies in the dance of disaster that unfolds for no reason. This is not cringe comedy, as all three get some sympathy and a head shaking laugh. But cringe comedy would happily use this bit (and it goes on much longer through the film, the essential “Duck Soup,” from 1933) and not get what makes it funny. (Larry David would be Chico Marx and his bald Edgar Kennedy would be some anonymous barista.)
Comedy works for me when it presents someone punching up at someone else, at a bully, at someone or something in power. It never works, and it is more likely to offend me, when it is a matter of punching down at someone or something.
(But isn’t Chico Marx’s mock-Italian accent [he was French-Jewish, by way of Brooklyn] offensive? I could reply with the “you have to know the context” argument, that his act was a commonly seen one in the era, that really, Groucho was the only Marx brother with an act unlike any other seen in the era, but if you find the accent offensive in the here and now of 2014 because it is not 1933, I really have no reply. If it is offensive to you, then it is.)
We all are members of interest groups. I am white, half-Jewish, half-Baptist, tall and thin, an alcoholic in recovery, and have a disease that is disabling me. What is the difference between this:
The second image is from the “Fight Ataxia Project,” a website for those people diagnosed with one of the many forms of ataxia (I was diagnosed with Friedreich’s ataxia for a year) and for their loved ones and caregivers. It is one of several t-shirt logos that the group is selling. When one has a neuromuscular disease like ataxia or spinal muscular atrophy, one trips a lot and one falls down. The t-shirt is for people with such diseases. It exists to show that we can laugh at (at) ourselves. With ourselves.
The first image is a surprise. Not in itself; I have seen it before. It falls into the general territory of hard-hearted internet memes like, “every poor person is gaming the system and has a better cell phone than me,” or “look at these out-of-perfect-physical-shape shoppers at Walmart! They dress funny,” or “disabled people are faking it.” I can only speak for me, but I am poor and you probably have a nicer cell phone than I have, I shop at Walmart and hate it, and I am disabled and wish I was faking it. Why would I?
But I am my own interest group here, obviously. Of course, as a disabled person (not in a wheelchair, and I avoid the word “yet,” but … you know) that must be why I must be offended, right? Nope. Not that. My offense is from the combination of the “miracle meme” insult itself—but it’s not that insulting and I wouldn’t be posting this long post merely about this image—with the “you can’t argue about taste” attitude many took towards it when it was shared by George Takei on his Twitter account last week. (There is a must-read piece—after reading mine, of course—by Scott Jordan Harris in the August 13 issue of Slate.) Yes, that George Takei.
This George Takei:
The wonderful George Takei. The heroic George Takei whom everyone loves, including me. Who has in the past taken down internet memes from his vast social media network when he and his ghost writers have come under criticism for offending. He did not take this one down when disabled rights activists complained (obviously, as I was able to post it here), and wrote this response:
Fans get “offended” from time to time by my posts. There hardly is a day where something I put up doesn’t engender controversy. Concerned fans, worried the sky may fall, ask me to “take it down.”
So I’m also going to ask them also to take it down—a notch, please.
What? Because this internet meme is ironic (a handicapped person stands up to get a bottle of booze fro the top shelf), see, and I do not get the irony because I am too close to the issue. You can’t argue taste, after all.
But wait, George Takei’s argument seems to be that you can argue taste. Many of my posts court controversy, he says, and I receive complaints every day, some of which I respond to, but the complaints from the disabled and their advocates, well, those do not balance out the sheer comedy of the miraculous alcohol post. The complaints of the sensitive disabled (if anything, the disabled are pretty thick-skinned) fell on his deaf ears. Which is a handicap.
* * * * Added at 8:07 a.m., August 14: George Takei posted this on his Facebook page this morning:
I’ve just come back from an extended trip to England, and I came home to a large number of fan emails concerning a meme I shared more than a week ago. In that meme, a woman in a wheelchair was standing up to reach for a bottle of liquor in the store, and the caption said something about a miracle in the alcohol aisle. To this I added a quip about her being touched by the holy spirits.
I did not expect the level of offense this meme caused. I had naturally just thought of those movies where the evangelical preacher miraculously cures someone who was disabled. What I’d never really considered before so many fans wrote in is how that portrayal of disabled persons is filled with ignorance and prejudice—two things I never want to promote, even inadvertently.
Now, before all of you go and start defending my right to post what I want, I want first to thank the many fans who wrote in with the hopes of educating me on the question of “ableist” bias. While I did not ever mean to suggest by sharing the meme that all people in wheelchairs cannot walk, or that they don’t need them despite the fact that they can stand on their own from time to time, I have taken the fan mail and criticism to heart.
After I’d posted the meme, I noted in the comments an inordinate amount of very uncivil behavior on the part of many fans, including both those who demanded I take it down and those who said I should leave it up. I also received a good deal of email IN CAPITAL LETTERS asking me if I would feel the same way if someone called me FAG or a JAP. Now, I took down the meme from my timeline shortly after it went up, but I admit I was decidedly irked by the tenor of some of those criticizing me. In that moment, I posted a follow up telling fans that perhaps they should “take it down—a notch” which, in retrospect, was not the most sensitive response.
The fact that I was surprised by the response the wheelchair meme received indicates that I do indeed lack knowledge, and some sensitivity, over what is clearly a hot button issue, and that I and others can take this as an opportunity not to dig in, but rather to open up to the stories and experiences of those in the disabled community. I appreciate those who took the time to write in. I wish I’d had the chance to respond sooner, but until today I was not able to go through all the mail I’d received.
So to those who were hurt by my posts on this issue, I ask you please to accept this apology. To those who think I shouldn’t have to apologize, I want to remind you that I get to decide what I apologize for, so there’s no need to come to my defense.
Very well then, carry on, friends. Carry on.
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