“Nobody wants to see that.”

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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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August Awareness and Lots of Stretchy Pants

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August is known for many things. Even though most summer vacations are ending, it’s still a month when the heat is blistering and the yucky air has that palpable, tangible quality… like an dog’s fart. Also, schools open this month and all the pumpkin spice food products will begin to appear in stores.

If you think it’s too early for it, you aren’t alone. Even though I have a well-developed love for pumpkin spiced lattes, I don’t want to drink one while it’s still 100 degrees outside. I don’t care if there’s a chance that my sweat could smell like an autumnal wonderland. It’s still not worth it.

August is also Spinal Muscular Atrophy Awareness Month. The month that celebrates and brings awareness to the 1 in 10,000 babies born (including me!) with a really peculiar— and often deadly— genetic glitch called Spinal Muscular Atrophy (SMA). While the condition is rare, 1 in 50 people running around this earth are actually genetic carriers. But, since it’s a recessive condition, it takes two of these carriers getting together to produce a child with SMA. Even then, only 25% of children of those unions will even have the condition.

If you are confused by this scientific explanation of recessive genetics, you weren’t fortunate enough to have had the late Mr. Eugene Field as a biology teacher at Patterson High School. I feel sorry for you if you missed out on his amazing greatness. I guess you’ll have to make due with looking it up on Wikipedia, instead.

Anyway, until very recently, a diagnosis of SMA was practically a death sentence. While advancements in medical care have allowed many of us to beat the odds and thrive long into adulthood, there was really nothing science could do to treat the condition itself. But, that is changing. For the past year, I’ve been receiving a gene-splicing treatment called Spinraza that boosts my production of a protein that my body is lacking. I’ve written extensively about my treatment journey on this blog. I’m happy to report that more treatments for SMA are on the horizon in the coming years, too.

Awareness months, like this one for SMA, serve an important purpose. They garner attention to the cause and provide a catalyst for fundraising. Many other medical conditions and diseases have their own awareness months, too. I’m sure many of you have taken part in such events. And that’s fantastic. After all, these are vital tools for generating donations for research. But, while raising money for a “cure” is very important, we mustn’t forget that we have to also support those living with these conditions, too.

We have to make sure that there are services and infrastructures available to help those currently living and fighting these conditions— and their families. As someone on the other side of this, I must say that I occasionally cringe a little when I see so many fundraising efforts with simple, pithy titles about running and walking for cures. Sometimes I feel like they miss the point. After all, before we can get to the moment when someone could possibly be “cured,” there will be a lot more time spent with the person needing support and helpful resources.

Let’s be honest, from a practical point-of-view, a “Walk for a Cure” isn’t really going to do a patient much good if they don’t have a way to get to their doctor appointments. Let alone if they don’t have personal care assistance in their homes or even nutritious food on their table.

And, I don’t mean to be a killjoy, but you know that 5k Run for Cure you did last year? The one where you wore those new $85 running pants from Lululemon? Yeah, that run is probably not going to help that rural woman in Kansas afford the pharmacy copay on the anti-nausea pills that she needs during chemo.

I don’t mean to imply that these fundraising efforts are useless. Nothing could be further from the truth. These events and funds are incredibly important. So, keep on running in your crazy expensive stretchy pants. But, while you’re doing it, remember that there’s more that we can do.

Awareness means more than a “cure.” It’s about living in community— together. Helping each other. Whether it’s August, or any other month of the year.

Until then, Happy August… and happy running.

xoxo