“Nobody wants to see that.”

In my writing, I haven’t shied away from making a joke or taking a snarky jab at people in power. I can’t help myself from doing it. It’s a compulsion. Like cussing and eating too many pumpkin-flavored products. As you might know, President Trump has been a recipient of this on multiple occasions. It’s just soooo easy when the man rabidly tweets nonsense at 3am, has a squirrel nest living on his head, and can’t address someone without adding a schoolyard insult in front of their name like he’s Biff from Back to the Future.

Yesterday, The Atlantic published an investigative report (the content of which has since been independently corroborated by The Associated Press, The Washington Post, and Jennifer Griffin of FoxNews), that the president has repeatedly disparaged military service members, calling those who died “losers” and “suckers” and that wounded and disabled veterans should be kept out of military parades. This article, and its contents, are currently being dissected all across the Internet, the Twitterverse, Middle Earth and Narnia— so, there is no need for me to delve into the article, as a whole. That’s being done by many others.

However, having said that, there is something in the piece that I do want to highlight. Something that I haven’t seen properly examined. Something, that as a disabled person, I read with deep sorrow, and, yet, it didn’t come as a surprise in the least.

The editor in chief, Jeffrey Goldberg wrote:

“‘He has a lot of fear,’ one officer with firsthand knowledge of Trump’s views said… Several observers told me [Goldberg] that Trump is deeply anxious about dying or being disfigured, and this worry manifests itself as disgust for those who have suffered… Trump has been, for the duration of his presidency, fixated on staging military parades, but only of a certain sort. In a 2018 White House planning meeting for such an event, Trump asked his staff not to include wounded veterans, on grounds that spectators would feel uncomfortable in the presence of amputees. ‘Nobody wants to see that,’ he said.”

Many have attacked this article as being unbelievable. A hit job. And “fake news.” That the president would never say such things. But, as a disabled person that has lived in the United States of America since my birth, I can say without hesitation, that the message and the view that I quoted above is utterly believable.

For centuries, the disabled were hidden away from view, believed to be curses from God, and were not allowed to live full, meaningful and proud lives. The ultimate evidence of human frailty and mortality, the disabled were to be shamed, pitied, and in some cases, exterminated. For disabled people of color, this marginalization is even more profound and insidious. Something we, the disabled, are definitely not? The mascots of strong, advanced, and powerful civilizations. (Just ask Russia. In 1980, they said that disabled people didn’t exist there at all.)

Some think these attitudes are a thing of the past, that we’ve come far as a society. After all, a few buildings now have ramps and crippled folks have designated parking spots to use— but, truthfully, these are often filled by privileged wankers who park there “For-just-five-minutes-while-I-drop-off-this-package-of-LuLaRoe-yoga-pants-at-UPS-to-ship-to-my-cousin-DeeDee-while-I-keep-my-motor-running-so-you-believe-that-I’m-not-breaking-the-law.”

But, deep-seeded notions, including those about disability, don’t disappear overnight. They persist. It’s why FDR knew he had to hide his disability to be President of the United States. There’s no way this country would elect a man in a wheelchair to be Commander-in-Chief. No way.

It’s probably also why Chadwick Boseman sadly hid his medical condition until after his death because he knew Hollywood movie studios wouldn’t continue to employ a man (especially a black man) with a serious illness or disability. Chadwick understood that if too many people knew, he would have been sent on his way with pretty words, a hug and maybe a really big fruit basket.

So, is it surprising that the current President of the United States allegedly thinks these things about disabled veterans? Hell no. Is it surprising he said these things out loud? Maybe to some people it’s surprising. To me, it isn’t. And I suspect it isn’t surprising to many other disabled people, too.

Say what you will about Mr. Trump. But, one thing he surely is? A mirror. A mirror that shines back at us some of the ugliest truths about ourselves. Some people are disconcerted by this lack of filter. But, maybe, just maybe, we should try to learn something from it. To look at how we elected this man to the highest office in the land— and what that says about us. About what that says about the things we say to ourselves when no one is around to hear.

But, in the words of Mr. Trump, “Nobody wants to see that.”

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Flossing & the Magical Days of 2020

(appeared in today’s PattersonIrrigator.com)

When there are things that we don’t do often, sometimes these activities can take on a shiny, magical image in our minds. This happens when you do something only rarely. It becomes idealized in your head. Like what happens when you think of going on vacation, buying a new car, or flossing your teeth when your dentist isn’t around to see you do it.

It’s the rarity of these activities that makes them special. The scarcity. It’s the fact that you don’t do them every day. Every four years, there are several of these rare events. Lucky for us, 2020 is one of these special years.

For starters, at the end of July, the summer Olympics will begin in Tokyo, Japan. Hopefully. Well, provided that the entire eastern half of the world hasn’t died of the coronavirus and human beings are still allowed to assemble in large groups. But I’m sure the Japanese will figure out something. I mean, they invented a toilet that can heat, clean and dry your butt, so tackling the coronavirus should be a piece of cake.

I love the Olympics. So, this is an exciting time for me, and for all people that don’t really watch sports. Yes, we actually exist. And, no we don’t all own six cats. Some of us only own five.

The great thing about the Olympics is that it’s the ideal sporting event for people that don’t watch sports. Why? You don’t have to worry about deflating footballs, coaches stealing baseball pitching signs, or whether a driver might die when a NASCAR explodes into the air at 200 miles an hour. By the way, the fact that Ryan Newman isn’t dead after last week’s Daytona crash makes me wonder if something weird is going on. Did Newman make a deal with God, Jesus, or Charlton Heston? Because, thankfully, it seriously looks like that.

Anyway, 2020 is an action-packed year. We also have a presidential election in November, but I don’t think I need to remind anyone of that. There’s really not much to say about the election, anyway. Well, other than that one super-billionaire and 29 senators are running to defeat an incumbent president that really likes to spray tan. Oh, and I should also note that when the leading Democratic candidate talks, his right fist moves around in the air like it isn’t even attached to his body. Like a Muppet.

But, every four years, something else happens. Something miraculous. Out of the ether comes an entire extra day. This Saturday is that day. Leap Day, February 29, appears like an apparition. Magic. Suddenly, you have another day to do whatever you want. You could do something that you’ve always wished to do, like plan a vacation, or floss. Or you could do absolutely nothing at all— like the U.S. Senate.

So, I hope you enjoy this Leap Day. Do something special. If not for yourself, then for someone else. Savor every minute— because a day like this won’t come for another four years.

P.S. Don’t forget to floss, though.

2018: The Year in Review

The year 2018 was a year of contrasts— both here at home, and the world over. Amazing heights of joy and emotion were seen— followed by lows of discord and weirdness. You don’t have to look far to see these contrasts in action. For example, after much international pressure, in June, Saudi Arabia finally granted women the right to drive a car. Unfortunately, any ‘brownie points’ this move earned the Saudi government were quickly squashed four months later when they murdered a Washington Post journalist. While the Saudis have denied this, everyone knows that they are lying. Just like everyone knows that the one person that denies farting at the dinner table is always the one that did it.

Here in Patterson, we are not immune to the odd dichotomy seen in 2018, either. Both our amazing PHS varsity and junior varsity softball teams won conference titles with undefeated regular seasons. This is badass. Unfortunately, it was also announced this year that we are getting yet another pizza establishment in Patterson— to go along with the 95 places that we already have. So, while the girls’ championships bring much joy to our hearts, the advent of more refined carbohydrates isn’t good news for our colons.

In the international sphere, though, 2018 was a very successful year for dictatorships. Kim Jong-un burst onto the stage with meetings with Donald Trump and also by crossing the border into South Korea— where he quickly discovered that Dennis Rodman is far less famous than he thought.

China’s leader, Xi Jinping, strengthened his control over the nation by getting term limits abolished so that he can serve as “President for Life”— a position that comes with a really good dental plan. Forbes Magazine ranked Xi Jinping as 2018’s most powerful person in the world, a position previous held by Vladimir Putin.

Speaking of Putin, in March, he was reelected to a fourth term as Tsar— err, I mean President of Russia. In this hotly contested race, his only competitor was a Muppet.

In the world of sports, 2018 saw the Winter Olympics held in the mountains of PyeongChang, South Korea. It featured many dangerous and icy sports that no one understands. Norway won all the metals because most of their athletes descend from the Abominable Snowman. Meanwhile, back in the United States, disgruntled NFL football fans decided that ‘having principles’ meant they would set their own shoes on fire.

In further national news, the Dow Jones Industrial Average, often used as a measure of the strength of the US economy, bounced around this year, from awesome highs, to terrible lows as 2018 drew to a close. This pattern oddly matched the demand for romaine lettuce and the popularity of Rosanne Barr. I don’t think these things are related, though.

Finally, in digital news, the most popular video game of the year was Fortnite. I suppose it’s better than the Pokémon Go craze of a few years ago. At least no one’s falling off cliffs or getting hit by cars while playing the game. But, Fortnite still has its shortcomings. Thousands of addicted kids are secretly gaming in the classroom on smartphones that they aren’t even supposed to have in school. And if that wasn’t enough, it’s also teaching an entire generation how to incorrectly spell the word ‘fortnight.’ This might be the most upsetting problem of all.

So, I’d like to take this opportunity to remind everyone that the word ‘fortnight’ is actually what you call a two-week period of time. Let’s say your child gets in trouble at school for punching a teacher in the face that’s trying to take away their smartphone. An apt punishment for this behavior would be deactivating their Fortnite account for at least a fortnight.

Lastly, I dearly hope that 2019 brings a little more stability for all of us— and a little less uncertainty. And if we’ve got to eat so much pizza in Patterson, for the sake of our colons, I sure hope we can have some romaine lettuce to go along with it.

After all, 2019 is less than a fortnight away…

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We Are Better Than This

(originally appeared today in my newspaper column in The Patterson Irrigator)

I have a story to share. A story that I sincerely wish I could tell you had not happened in this town. In the diverse community of Patterson that I love so very much. But, this story is worth telling as a reminder of the danger of extremes— of intolerance. The dangers of harsh words, snap judgments and, at the core, racism.

This story wasn’t mine to tell, but I asked permission from the young woman at its heart— who is a long-time and very dear friend. And she agreed to let me share this with you all. She knew, just as I do, that this is an important lesson— especially during these politically divisive times. For, while we know things like this happen in other parts of the country (just a glance at the news confirms that!), we can’t pretend that something like this can’t (and doesn’t) happen in Patterson.

My friend is one of those extraordinary friends— the kind that are always there for you when times are tough. Like me, she’s a graduate of Patterson High School and a homegrown California girl. We both have an affinity for Netflix, tacos and perfectly-made caramel macchiatos. She’s much more altruistic than I am, however. Instead of writing jokes about world dictators or all the other lame things I write about, she has, instead, worked hard through college and hospital rotations to become a licensed nurse. She’s a doer… and I’m just, well, a person with an overused vocabulary. The world needs more people like her— that’s for certain.

On a recent Patterson day, she was walking up the sidewalk to the City Hall to pay her family’s utility bill. Suddenly, a middle-aged Caucasian man spotted her and, out of the blue, began assaulting her with a barrage of hateful words. While most of the phrases he used are not suitable for print in this newspaper, here is the edited version: “Hey wetback! Yeah… Go back to Mexico. You, and all the others, need to go back to Mexico. Ha! I bet you can’t even understand what I’m saying right now.”

When my friend told me the next day what had happened, right in our little town, I got so angry that I felt blood begin to pump in my ears. But, once again, proving that she is a far greater person than I would have been, she didn’t engage with her harasser. While I would have tried to run him over with my wheelchair, she instead ignored him and went about her business. Her decision to ignore was the wise and prudent choice. But, it was a choice that she should have never had to make. It was an experience that no one should have to endure.

But, she told me that the most upsetting part wasn’t that it had happened— she knew that things like that happened to other people every day. Rather, it was that it happened in her own hometown. She admits that perhaps it was naive, but she had never imagined that something like that could happen here in Patterson. I think I must be a little naive, too, because I never thought it would, either.

But, it did. The question is, as a society and as a community, what are we going to do about it? For a person to shout such abuse in public, it means that he feels validated enough to do so. He feels like it’s just, and right, for him to say such vile things. And, in the weeks, months, and years before taking such an action against an innocent young woman, he’d been building up to that point. He’d been listening to pundits on the radio, or television. He’d been making comments to friends, coworkers, and neighbors. Comments that perhaps met with agreement, or disagreement, even if it was only silently or passively so.

But, such attitudes don’t exist in a vacuum. They don’t sprout out from the ground like a wild turnip. Society nurtures them. Allows them to take root and grow. So, we must all take responsibility for our role in that.

We must be better. Do better.

It all begins with us.

Driven To Laziness

As a species, I suspect we humans are getting lazier with each passing year. While I love technology as much as the next person— in fact, I probably love it more— I think it has caused our brains to shrivel into the size of a bar of soap. Not the regular kind, mind you, but the cheap travel-sized ones you buy at Dollar Tree.

We can’t be bothered to do the simplest things anymore— like memorize phone numbers and learn how to read a map. Instead, we have our smartphones do this for us. Last week, I used Waze, the navigational phone app, for the first time. It’s pretty great, but it takes away any need to think. All you have to do is trust the Waze system and blindly follow its directions. It’s like living in North Korea and watching their state television. If you do what they say without question, you won’t end up dead in a ditch outside Pyongyang.

Waze constantly updates the driving route based on current traffic conditions. It even gives live alerts for upcoming stalled vehicles, CHPs, road construction, and where to find the best tacos within a 2-mile radius. Okay, I might have made that last one up. But, if the Waze people are as smart as I think they are, they should do that, too.

Yet, I fear we rely on these navigational apps, like Waze, too much. In fact, we probably couldn’t even find our way home if they suddenly stopped functioning. I’m not kidding. There’s a good chance that many of us would end up lost— wandering for 40 years in the desert like Moses.

And, I don’t know about you, but I’m not built for that kind of hardship. I get burned within minutes of being in the sun and I freak-out at the sight of an insect. I would not have lasted long in the desert with the Israelites.

As a society, we are also good at trying to make things more convenient that really don’t need to be made any easier. At the store yesterday, I saw a bin of russet potatoes priced at 98 cents a pound. Next to those, were a small pile of russet potatoes that were individually wrapped in plastic. These potatoes were 98 cents, each, and were labeled “microwaveable potato.”

All potatoes are microwaveable. And they already have a handy feature called a “skin” that acts as a natural covering. Are we that lazy that we can’t wash a regular potato, poke some holes in it with a fork, and stick it in the microwave? Or, if we’re not crunched for time, rub some olive oil on it and bake it in the oven?

This makes me a little sad for all of us. If Moses were around, he’d probably stroke his beard and remark in dismay:

“Oy vey!”

The DNA Don’t Lie

It’s been a whirlwind few weeks since the announcement of the FDA approval of Spinraza— the first-ever treatment for Spinal Muscular Atrophy.

Considering I had never heard of Spinraza until a few weeks ago, it’s amazing how fast a new word can enter a person’s vocabulary. It’s like when we were introduced to the expression “hanging chad” during the 2000 Presidential Election. No one had heard of a hanging chad before, and suddenly it became the most important thing in determining how to count votes in Florida— which in turn would decide who would become the President of the United States. It was all anyone could talk about— like that one time when Janet Jackson flashed her boob at the Super Bowl.

In case you are wondering what a “hanging chad” is, it’s what happens when a person voting using a punch-out ballot doesn’t push the little circle all the way out of the paper.

It’s not surprising the 2000 election kerfuffle happened in Florida. Everything weird happens in Florida. Those people are so chronically dehydrated from their ridiculous humidity that they don’t have the strength or clarity of mind to do much at all— let alone punch out a ballot correctly. I know I can’t even remember my own damn name if the temperature climbs too high.

Anyway, it’s rather remarkable that Spinraza, a word I’ve never uttered until recently, I now say at least three or four times a day. That’s nearly the number of times I utter the word f#%$. So, yeah, that’s a lot.

As I’ve documented on this blog, previously, I’ve begun the process to get Spinraza. And, “process” is definitely a way to describe it. They aren’t just giving this stuff away— like it’s a free donut at Krispy Kreme or a cabinet position in the Trump administration. No, they want me to earn it.

Today, I’m one step closer to achieving this goal. To qualify, a big component is having a DNA test on file showing my SMA gene configuration and my number of SMN2 copies. This is required because Spinraza may only work for those who meet certain parameters.

While a DNA test has been the standard way to diagnose SMA in recent years, I had never had this done before. I was diagnosed by muscle biopsy as a toddler, instead. I still have a two-inch white scar on my left thigh as a memento of the occasion. Good times.

Even if I had wanted it, DNA screening wasn’t around when I was diagnosed in the 80s. Yet, we did have lots of other things worthy of note that decade— like Cabbage Patch Kids… the Berlin Wall… and Bill Cosby before we found out he was such a pervert.

But, today, I’m one step closer to achieving my goal. I just got my DNA results and… *drumroll please* … It’s official, I do have Spinal Muscular Atrophy! And 3 copies of the SMN2 gene!

I know that may sound anticlimactic. But, I suppose it’s good to know I just haven’t been faking this for the last 35 years. I really am disabled. Yay, me!

Now that this hurdle has been cleared, I move on to the next step… getting insurance approval. Given the revolutionary nature of this treatment, and the limited folks that can use it, it comes with a hefty price tag— $750,000 for the first year… $375,000 per year, thereafter.

Yes, you read those numbers right. It’s not a typo.

My doctor at Stanford expects insurances to fall into line, but there’s no guarantee. So, keep your fingers crossed for me. I’m gonna need it.

XOXO

#groundhog

Aside from Mickey Mouse and Rudy Giuliani, Punxsutawney Phil is probably the most famous rodent in the world. Since 1887, the chubby groundhog has emerged from his burrow every February 2nd to give a super-scientific weather prediction. If he sees his shadow, there will be six more weeks of winter… if he doesn’t, there will be an early spring.

Due to the movie Groundhog Day, starring Bill Murray, the event has gained a nationwide following. This morning, The Today Show broadcast the event live. I watched it, transfixed. It was folksy and quaint… I hadn’t seen that many old white guys in one place since Rex Tillerson’s Senate confirmation.
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Hundreds gather each year in Punxsutawney, Pennsylvania to witness this event. They drink lots of beer, wear weird top hats, and hoist poor Phil in the air triumphantly like baby Simba in the Lion King. When he did that this morning, a large part of me hoped that the groundhog would pee on top of the man’s head. Now that would be good television.

According to Phil’s prediction this morning, we will have six more weeks of winter. After seeing his shadow, he returned to his burrow— his job complete.

Time will tell if the groundhog is correct…

Speechless Does It Right

ABC’s Speechless has arrived. Finally! Hollywood gets off its collagen-loving, perfectly coiffed ass and creates a network television show featuring a main character in a wheelchair. *gasp* If that wasn’t remarkable enough, the role is also played by a real honest-to-goodness disabled actor with cerebral palsy. *double gasp*

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I should note that this isn’t the first attempt to be “inclusive.” Shows like Facts of Life, Life Goes On, and most recently, the Game of Thrones, have attempted it to varying degrees of success. (Peter Dinklage is our answer to Laurence Olivier) But, it shouldn’t be such a noteworthy achievement— considering that folks with disabilities make up such a large segment of the population. According to the U.S. Census, it is estimated that 19% of Americans live with some sort of disability. The umbrella of disability includes various sensory, motor and physical impairments, as well as, invisible disabilities— like learning challenges, autism spectrum conditions, and those with chronic mental health issues.

Yet, despite the large pool of disabled folks from which to draw, 95% of disabled characters in movies and television have been played by able-bodied actors. If you’re lucky and can manage to be an able-bodied white actor playing an “inspiring disabled character” in a movie (à la Dustin Hoffman, Eddie Redmayne, Al Pacino, Tom Hanks, etc.), the Academy can’t shower you with an Oscar fast enough. You might as well get the spot ready on your fireplace mantle right now. It won’t be long before a naked, golden— and slightly androgynous— man is perched on top.

Hollywood loves to be “inspired” by stories of heroic disabled people overcoming the odds to achieve remarkable feats— like breathing, eating, sleeping, and making able-bodied people feel better about themselves. Since most of the writers and directors are also able-bodied, these roles are often clichéd, one-dimensional and firmly keep the disabled character in the box labeled “inspiration.” Since 1989, 14 of the 27 Best Actor winners have played a character with some kind of disability. And of those 14, only Jamie Foxx was a person of color. #OscarsSoWhite #NoRealCripplesAllowed

And that does all of us, disabled and not, a great disservice. The disabled community is just as diverse, talented, and multi-faceted as society at-large. By portraying us in such a limited way, we are all losing out.

This is why I am encouraged by the arrival of ABC’s Speechless. It’s quirky, messy and slightly irreverent— with an authenticity and edge that you rarely see in Hollywood’s depictions of disability. We live in a society that spawned the Kardashians, so generally we aren’t allowed to see anything on television that hasn’t been nipped, spray-tanned, and plastered with Botox. So, Speechless is a refreshing change.

Hope the show keeps to its roots and holds on to its edge. If you want to watch a show with sugary sentimentality, you can just watch reruns of Full House.

(For the time being, you can stream the first episode here: http://abc.go.com/shows/speechless/episode-guide/season-01/1-series-premiere-p-i-pilot)

elizabette… unplugged

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