Facing Voldemort

Standard

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.

witch

That October I devoured the entire Harry Potter series

Standard

October is my favorite month. I like the windy days, the pumpkin treats and the slightly nauseated feeling you get when you eat all the Halloween candy you bought days before the trick-or-treaters even arrive at your doorstep.

As I flipped my calendar, my mind flashed back to many of the Octobers of my past. While most of the memories were pleasant, there were a couple that I’d like to forget. Like when I was a sophomore at Patterson High and suddenly vomited all over my typewriter in Mr. Pate’s first-period keyboarding class. Luckily, the sound was covered by the clattering of 35 typewriters that never managed to type in unison – despite Mr. Pate’s best efforts. Not only was it totally embarrassing, but I ended up being too sick to attend football homecoming that week – major bummer.

Thankfully, most of my Octobers have been much better than that one. Especially the one back in 2007, when I spent the entire month reading the Harry Potter series from beginning to end.

The seven-book series by J.K. Rowling was published over the course of ten years – beginning in 1997. As each book was released, readers of all ages impatiently pre-ordered their copies online or waited in line at bookstores. It was a publishing juggernaut. The book world hadn’t seen these kinds of bestselling numbers since King James decided to jazz up the Bible in 1611.

I’m a certified bookworm. In elementary school, I was the kid that always won the Reading Award. I don’t mean just sometimes. … I mean all the time. No one could approach my fearsome reading skills. I was a book ninja, a literary Bruce Lee – only not so flexible.

But faced with a phenomenon like Harry Potter, I knew I couldn’t patiently wait for each book. It was an excruciating prospect. Thus, I made a decision. I would wait to begin reading the books until all seven had been published – even if I had to wait years to do it.

In October of 2007, I took the plunge. And it was glorious. For that month, when I wasn’t sleeping or showering, I was reading Harry Potter. I lived it, breathed it – and when I grew sleepy at night, I cursed my eyelids for refusing to stay open. Did Harry fall asleep during his quest to bring down Voldemort? No, he didn’t. But unlike Harry and the rest of the Order of the Phoenix, I’m a damn Muggle. And Muggles need sleep. Blast it, anyway.

When I finished reading the last book, I cried. I’m not sure whether it was out of joy, sadness, or grief for the fact that I would never again be able to read Harry Potter for the first time. But I wouldn’t trade the experience for anything.

If only all Octobers could be so great.