Facing Voldemort

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When you’re disabled, you learn to adapt… tweak… make-do. These skills are essential, because as much as the modern, progressive world likes to think it’s ‘woke as **ck‘ — it’s really not. Full inclusion of disabled people in society is a long way off, and these issues barely register on even the most liberal political agendas. In fact, during this election season’s rounds of televised Democratic debates, I haven’t heard one of the 318 presidential candidates even say the word ‘disability.’ Considering disabled Americans are the largest minority group in the country— one that spans race, gender, religion, sexual orientation, and socioeconomic background— you’d think it would come up. At least once. (Just like Bernie Sanders yells and shakes his fists at another candidate at least once a debate.)

It’s possible the candidates are just being thoughtless in ignoring disability issues in the debates— like when careless people forget to put another roll of toilet paper in the bathroom after they’ve used the last square of Charmin. But, perhaps there is another, more sinister meaning. What if they are subconsciously afraid of saying the word ‘disability‘ aloud because then it acknowledges that we actually exist? And, maybe, just maybe, they are frightened of us? It could be possible. After all, this was why everyone was reluctant to say Voldemort’s name aloud in Harry Potter.

Let’s not forget that even The Ministry of Magic discouraged folks from saying it at Hogwarts. They worried that if someone voiced the name of Voldemort, the most dreaded wizard in the land, it would give him the power and recognition needed to rise up. And that was definitely not okay… because then all the normal wizards would have to face the fact that they were only one Death-Eater attack away from a nursing home run by Hufflepuffs.

So, yeah, you can see why they’d prefer to pretend like we don’t exist. It’s scary to imagine the power potentially wielded by 1 in 5 Disabled Americans. Because not even the mighty Teamsters Union can muster these kinds of numbers— even though Joe Biden desperately wishes that they could.

I think maybe it’s time for us to be a little scary. Be a little loud. Because we are not only fighting for ourselves. We are fighting for everyone. After all, we are also the only minority group that anyone can become member— at any time. Plus, if you live long enough, you’re probably eventually going to need the homecare services we are fighting so hard for, too.

I hate to break it to you, but not even the best Patronus charm can do a damned thing about that fact. Eventually, you’re going to need someone to help you get out of bed in the morning. You’re going to need someone to help you prepare your meals. Hell, you’re probably going to need help wiping your own ass. But, here’s the thing: unless you meet the impossibly stringent & poverty-driven Medicaid guidelines, you won’t qualify for homecare services.

Despite what you may believe, Medicare and private medical insurances currently do not cover homecare. So, you could lose your house, your retirement and all the things you worked your entire life to achieve just to pay for medically-necessary care costs.

Thinking of just going to a nursing home? Good luck with that— the care received in institutionalized settings are substandard, dangerous, and far, far more expensive than the costs of providing care in your own home… in your own community.

Given that homecare is cheaper and safer than institutionalized care, isn’t it surprising that it’s not covered by Medicare and private insurances? Wouldn’t logic say that it should be covered? Well, yes. But, denial is a powerful thing. And the denial of the notion— the reality— that anyone could become disabled at any time in their life is even more powerful. It’s no wonder no one wanted to say Voldemort’s name in Harry Potter. That was some scary shit, yes?

But, if these services existed— and were more available— maybe disability (and even old age!) wouldn’t be so fucking scary to everyone. Maybe then we could change the whole narrative around it.

However, first, a narrative must begin. And, to do that, someone needs to talk about it. But, I’m afraid that with the current slate of presidential candidates, that’s not likely to happen. Why?

Well, the top contenders Joe Biden, Elizabeth Warren, Bernie Sanders and—yes, Donald Trump— are all over the age of 70. Given society’s subconscious aversion to disability and old age, these four main contenders definitely do not want to draw attention to how old they actually are. (I mean, no one wants to yell Voldemort in a crowded cafeteria, do they?)

Even though you’d think these presidential contenders would be ideally suited to discuss these issues (given they are closer to the age of needing these services), there’s NO damn way they are going talk about that. Just look how long it took Bernie Sanders’ campaign to acknowledge his recent heart attack? Look how evasive Donald Trump is in releasing his full medical records? (And, no, it’s definitely not because he’s got the most greatest health in the history of all American presidents— including, of course, all the leaders of the most bigly and powerful nations in Earth history.)

So, who is going to do the talking, if not us? Who is going to make people uncomfortable so that they can face the reality of their own human frailty? That they will need help someday? I guess that falls to us disabled folks.

This election season, perhaps you should give this some thought. Who will best fight for you when you need it most?

Because, like it or not, Voldemort is coming.

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Inclusion & Integration — Everyone Wins

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(This piece originally appeared today in The Patterson Irrigator.)

Recently, this newspaper chronicled the story of Owen Tyler— a seventh grade student with Down syndrome that is an active and valued member of the Creekside Middle School wrestling team. A video from one of his matches went viral online, highlighting the story of his inclusion in school and community activities. When I saw the video myself, it made me smile. After all, where there is inclusion, all humanity thrives and flourishes.

I would like it if we lived in a world where stories like Owen’s became commonplace. That inclusion became the rule, not the exception. That videos like the one from his wrestling match became so ordinary that there would be no need for it to be on television news.

As a disabled adult, I can attest to the importance of inclusion. I spent my youth mainstreamed in school classes and welcomed in extracurricular activities. This allowed me to grow and shaped the adult I would become. Further, I learned that each diverse voice counts, and that includes disabled voices like mine. Like Owen’s.

We must remember that inclusion of disability doesn’t end in childhood— it must continue on into our later years, too. After all, we spend much more of our lives as adults than we do as children. So, as a society, we must commit to this principle. We must value these life experiences and the importance they bring to society at-large.

The disability community is the only community of which anyone (regardless of age, race, gender, and income) can suddenly find themselves a member. An illness, an accident, the effects of age, can all lead someone to become disabled. At any time. This is why valuing inclusion is so important. Because there’s a good chance that it could affect you, or someone you love dearly, at some moment in life.

There is a bipartisan bill sitting in Congress right now called The Disability Integration Act (S.117, H.R. 555). It seeks to secure the Constitutional right to liberty for disabled people and seniors who want inclusive lives in the community. It wants to help aging seniors and the disabled stay in their homes. It seeks to save millions of federal and state dollars by avoiding expensive institutionalization, which is far costlier and less-effective than home- and community-based services. But, most of all, it seeks to make the spirit of inclusion part of the law.

This bill needs public support to help it move forward. So, I urge you to learn more about The Disability Integration Act. Talk to your elected representatives. It could make a big difference to you and the future of your loved ones— whether you realize it now, or not.

After all, where there is inclusion, all humanity thrives and flourishes. Just ask Owen.

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1990: Revisited

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With the passing of Barbara Bush earlier this week, the news has been awash with memorials of her life and the presidency of her husband, George H.W. Bush— or, as I not-so-secretly call him, “Old Man Bush.” I realize that calling the 41st president by that moniker sounds ageist and mean, but given we had another president with LIKE EXACTLY THE SAME NAME, how else am I to differentiate the two?? I suppose, in some ways, though, it’s better to be “Old Man Bush” than it is “Little Bush” — which is what I called his son.

Anyway, in all honestly, my recollection of the years when George & Barbara Bush lived in the White House are decidedly hazy. I was only around 8 at the time, so anything that wasn’t in the shape of a Lego really didn’t interest me. But, nonetheless, I do have vague flashbacks of Barbara with her shock of white hair and her bright suits the color of a Troll doll’s hair. Seriously, those suits were bright.

I bet she even glowed in the dark.

You know… it’s easy to imagine George and Barbara playing hide-and-seek in the White House. ‘Cause, if anyone were to do it, it would probably be those two lovebirds.

Bar, ready or not, here I come!” A few minutes of scrambling later, and then you’d hear George exclaim, “Come here, you saucy minx, I can see you glowing all the way from the Lincoln Bedroom!

Anyway, I do remember Barbara’s literacy programs in my elementary school, but as I was a certifiable bookworm already, Barbara was truly preachin’ to the choir with me. I don’t think it was possible for me to read any more books— after all, I had already made my parents broke by forcing them to buy me the entire series of The Babysitters Club. (I wish I was kidding.)

But, despite my early ambivalence to politics, I do remember one landmark moment during the presidency of Old Man Bush (sorry, I still can’t seem to help myself). It was that moment in 1990 when George signed The Americans with Disabilities Act (ADA) into law.

I didn’t know it at the time, but that legislation had been a long time in coming. Many disabled activists had endured many trials and hardships to make that moment possible. Even though I was young, I could still feel the importance of that revolutionary document. On the news that day, I saw folks in wheelchairs at the White House sitting next to the president. I had never seen that before. They were people like me. (Although, in all honesty, they were mostly male and super white. At the time, of course, diversity was an unnecessary concept, not an actual reality. You know, like women CEOs and food allergies.)

The ADA would nonetheless go on to shape the civil rights movement for disabled people all over the world. It was a giant leap forward for accessibility, inclusion and equal-access. But, as amazing as the legislation was, it’s still an imperfect document. It has loopholes, exclusions, and falls short in various areas that could further improve the lives of people like me. So, I can say without hesitation that we still have a long way to go. There are still many barriers that must fall.

Despite this, there has been a movement recently to try to erode away some of the protections of the ADA. Earlier this year, the House of Representatives passed H.R. 620, a bill misleadingly named “ADA Education and Reform Act of 2017.” By removing the reasons for businesses to proactively comply with the ADA, H.R. 620 attempts to chip away at the rights of a disabled person to fight for the removal of barriers to access. It makes it more difficult, and nearly impossible in some cases, for an aggrieved disabled person to seek accommodation. Nonetheless, the shitty bill has moved on to the Senate, where it sits right now.

With the passing of Barbara Bush, it’s made me reflect on that moment when her husband first signed the ADA. Often more vocally progressive than her husband, I’m sure that moment in 1990 brought Barbara much pride.

Now, all these years later, we shouldn’t be looking to scale back the ADA, we should be working to expand it. Time marches forward, after all.

Unless you can’t walk. Because then you might not even be able to get in the building.

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(Old Man Bush signing the ADA in 1990. Photo via Associated Press)

Messy Drawers, Cassette Tapes & Vladimir Putin

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There’s no right or wrong time to clean out a messy drawer, or that one cabinet that hasn’t been touched since audio cassette tapes were still a thing that people actually used. Don’t mistake this as a diss on cassettes— nothing could be further than the truth. I used to love to rock out to Michael Jackson’s Thriller album on my mint green boom box. In fact, I eventually wore the cassette tape out and had to use some of my piggy bank money to buy a fresh copy at the mall. This was a time when you had to actually drive to the store to buy music— so it was a serious commitment. You had to really want something if you were willing to make your mom drive you 40 minutes to the Vintage Faire Mall to get it. After all, in the 1980’s, the only thing you could download from a Cloud was some rain.

Cleaning out an old drawer or shelf can be a therapeutic experience. I know I always feel better, lighter, and calmer when I can de-clutter something. That’s a fact. Unloading possessions is deeply cathartic. While I know that some people get the same feeling from yoga and meditation, I suspect Vladimir Putin gets a similar zing of excitement when he invades Ukraine and polishes his knife collection.

Sorting through old stuff can yield surprising results, too. Once I found a $20 bill in a nylon fanny pack at the bottom of my dresser. Remember fanny packs? Yeah, I wish I didn’t, either. Aside from being horrified that I actually wore the damn thing, I instantly felt like I had won a prize by discovering the twenty bucks inside. It didn’t seem to matter that it was actually my own money, I was still a Powerball winner in my mind.

A few days ago, I cleaned out an old drawer in my bathroom. Inside, next to a crusty bottle of Johnson & Johnson Baby Powder, and in front of a curling iron that hadn’t been used in over a decade, I found a little box. Inside? My high school class ring! I hadn’t seen the ring in years, in fact, I had forgotten all about it. But, alas, here it was in my hand, smelling slightly of old talc, yet none the worse for wear. It was like finding a $20 bill, only way better. Vladimir Putin probably gets the same feeling when he imprisons dissidents and runs around the Kremlin naked.

So, the moral of the story is this: don’t wait to clean out that one messy drawer in your house. While you may only find old buttons, some matchbooks, and a few dried-up pens, there’s a chance you could discover something awesome. Like a $20 bill, your high school class ring, or— if you’re Vladimir Putin—your secret stash of Soviet-era nuclear weapons.

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If only everyone could be so lucky.

Muddy Habits

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As the old saying goes, “Some habits are hard to break.” I tend to think that all habits are hard to break— otherwise we wouldn’t call them habits. They’d just be things-we-do-sometimes. Or stuff-we-do-without-thinking-about-it. Or, if you’re President of the United States, it would be called Tweeting-At-3am.

I have many habits; in fact, my life is awash in routine. I find it calming to live life this way. To use another cliché, I am not the kind of person to “fly by the seat of my pants.” In fact, this would be a physical impossibility since the seat of my pants is firmly affixed to my wheelchair. Unless Superman swoops down from the heavens, I’m not flying anywhere. This is not to say that I would object to this concept, though. I wouldn’t— because Clark Kent is hot.

Not all my habits are as healthy or as useful. For example, when I get anxious, I pick at my fingernails. As a kid, I used to bite my fingernails, but when I learned how many germs lurk underneath, I was totally cured of that practice. So, now I pick at them, instead. It is still somewhat gross, but less disgusting. At least that is what I tell myself.

We all have habits, like these, that we shouldn’t do. Given the heaps of rain we’ve had this year in Patterson, I know one thing that no one should be foolish enough to try— and that’s driving a vehicle into, or through, the mud.

Our agricultural land is rich— and heavy. The nutrients and clay make the ground in the Patterson area some of the best soil in the world. But, this heaviness means that if the soil gets saturated, or even slightly wet, it will sink anything that tries to drive through it.

So, please, don’t do it. I’ve seen cars, trucks, vans, tractors, school buses, and most recently, a USPS mail truck, get stuck in Patterson’s mud. It took three men to free the poor, bedraggled mail truck from the sloppy mess.

Take a wrong turn? Decide to try to turn around off the side of a country road? Think again. You better hope you find a friendly farmer or a dude with a huge truck to pull your dumb self out of the mud.

If, by sheer luck, you manage to not get fully stuck, you will make such a mess getting out of the mud that the resulting crater will be seen from space. Russian cosmonauts on the International Space Station will be too busy laughing at you to help rig any more elections.

I’ll make you a deal. If you promise to not drive in the mud, I will try to stop picking my nails. While I can’t make any guarantees, I’ll do my best.

Maybe these habits won’t be that hard to break, after all.

Rain, Pizzas, and Things That Annoy Me

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We all have things that annoy us. The things that make us grumble and roll our eyes. Overpaid celebrities that complain about the hardships of being famous. Potato chip bags that are only 35% full when you buy them. People who don’t text.

If you are over 70, I will give you a pass on that last one. Otherwise, get with the program. And, for goodness sake, don’t leave a voicemail. Many of us consider voicemails to be, at best, an irritation and, at worst, a harbinger of doom— like a Sean Spicer press conference.

Yet, despite these examples, there are few things as trite as a Californian complaining about the weather. After all, we live in the land of sunshine, moderate temperatures and the Kardashians. What more could we possibly want? Plus, here in Patterson, we enjoy vistas of palm trees, lushly cultivated fields, and more pizza places than one town could conceivably need.

Seriously, though, we have a lot of pizza places. As a town, we must consume more pizza than I think. Otherwise, we wouldn’t have quite so many places to buy it, right? Our per-capita pepperoni usage must be— to borrow a word from Mr. Trump— huuuuge.

Anyway, given the drought plaguing our state, I’m thrilled to see all the rain. Truly. It’s been the focus of our hopes and prayers. However, when you’re used to sunshine and palm trees, if you don’t see the sun for the better part of a week, you start to feel blue.

The other morning, during a brief pocket of sunshine, I stopped in the middle of the Savemart parking lot, turned my face to the sky and let the warmth and Vitamin D soak into my face— along with UV rays that will eventually make me haggard and wrinkly.

I am fully aware that I sound privileged and whiny. I should be nothing but grateful for the rain we have received. Especially considering there are some places in South America’s Atacama Desert that haven’t had measurable rainfall in 500 years. That’s a long time. If you’re waiting for rain in the Atacama, you might have to live and die 7 or 8 times just to see it happen. And you thought waiting in line at the DMV was bad.

But, please forgive me for complaining. Sociologists would place me as an older member of the millennial generation. According to them, we millennials can’t help ourselves from exhibiting these behaviors. While I’m not certain I agree with this assessment, my hipster reward card does have enough stamps on it to qualify me for a free soy latte made with sustainably-grown coffee, organic vanilla and freshly-harvested unicorn tears.

Nonetheless, I will do my best to continue to be grateful for the rain. But, if that fails, I’ll just drown my sorrows in a pizza— or seven.

The Not-So-Super Bowl?

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Where’s the pomp? Where’s the circumstance? Where’s the nachos?

Each year, the fervor around the Super Bowl reaches such a crescendo that by the week of the game, I am OVER it. The kind of OVER it I usually reserve for fads that have dragged on for just a little too long— like manbuns and Justin Bieber’s career.

However, am I the only one that has noticed that the nation’s excitement for the Super Bowl this year seems somewhat muted? Where’s the endless news coverage? Where are the beer commercials and the scantily-clad models eating dripping, fatty burgers that they would never, ever eat in “real life?”

This is not a complaint, mind you. After all, I like professional sports about as much as I like Hawaiian pizza. And, trust me, I do NOT like Hawaiian pizza. It’s gross and unnatural. Whoever thought of putting pineapple on a pizza should never get to eat pizza again. In any state, including Hawaii.

But, I digress.

Is the excitement for the Super Bowl as fervent as usual? Maybe it is and I’m just intentionally living under a rock. Sometimes I do that. Like that time 15 years ago when I refused to accept that the television show, Friends, was really ending? Or that time last week when I didn’t want to accept that Barack Obama wasn’t our president anymore?

There’s no way that football’s popularity is waning. After all, a testosterone-driven culture, like ours, doesn’t just change overnight. America doesn’t just wake up one day and say, “Fuck Football— I’m going to sit here and knit myself a sweater, instead.”

We aren’t that evolved… or that crafty.

Unfortunately.