Driven To Laziness

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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

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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.
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XOXO

#groundhog

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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

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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)