Death by Bureaucracy

#DisabledLife is filled with unexpected surprises. Sometimes, it’s having a caregiver call out, leaving you scrambling to find someone to come get you out of bed before your bladder explodes. Sometimes it’s getting into your wheelchair, desperate for coffee, only to discover that the motors have died. Mind you, this is just 18 months after you spent $1,000 to replace those same motors. Good luck getting insurance to pay for it… those miserly wankers only dispense wheelchair repair money in tiny allotments— like it’s radioactive uranium.

#DisabledLife is also all the time you burn navigating the minutia of a society not designed for people like you. Inaccessible places. Healthcare bureaucracy. People that won’t wear masks. But, if that wasn’t enough, #DisabledLife is also spending hours trying to get medical professionals to believe that you know more about your own needs than they do. (Heaven forbid!)

This weekend, I had another one of these #DisabledLife surprises. In my mailbox, there was a packet with one of the most dreaded return marks in the corner:

SOCIAL SECURITY ADMINISTRATION

When I saw it, I knew that nothing fun would be inside. There would be no Target gift cards, or 50% off coupons for pumpkin spice candles. There would be no sweet messages with heart emojis or stickers that smell like root beer. Instantly, I knew that no matter how good my day had been going up to that point, that the rest of my joy (and patience) was going to be drained by the contents of that envelope— like a damn black hole.

“Fuck.”

Yes, I actually said this aloud.

Then, I stared at the envelope for a few moments, debating when/how to open it. I eyed it suspiciously, like a bomb squad specialist defusing an explosive. When I couldn’t take the anxiety anymore, I grabbed my homemade letter opener (with a long handle designed for my weak, skinny hands), and sliced it open.

I read the top of the page:

“The Social Security Administration must regularly review the cases of people getting disability benefits to make sure they are still disabled under our rules. It is time for us to review this case. Enclosed is a Disability Update Report for you to answer to update us about your health and medical conditions, and any recent work activity… Please complete the report, sign it and send it to us in the enclosed envelope within 30 days…”

In case this jargon is confusing, let me translate: Social Security has given me 30 days to prove that my permanent, genetic disability hasn’t magically disappeared… like classified documents do at Mar-a-Lago.

I grumbled. And cussed some more. Then, I changed my weekend plans from “Binge Abbott Elementary on Hulu” to “Fill Out Useless Paperwork.”

My irritation was massive. It took all my willpower not to set the packet on fire. (Truly.) Yet, I managed to complete the forms. For the sake of my own sanity, though, I added the following letter for good measure.

Think they will reply?…

…

October 8, 2022

SOCIAL SECURITY ADMINISTRATION, P.O. BOX 4550, WILKES BARRE, PA 18767-4550

SENT VIA UNITED STATES MAIL

Dear Person Working At The Social Security Administration:

Hello. First, I’m sorry that you work at Social Security opening mail and reading letters just like this one. Everyday. Even after you’ve been sick with the “flu” — or, as is more likely, just hungover from too many margaritas.

Second, I’d like to introduce myself. My name is Elizabette. I live in California with a cat named Charley that likes to steal my breakfast. I was diagnosed with Spinal Muscular Atrophy, a genetic neuromuscular disability, at the University of California, San Francisco, just before my 2nd birthday. I started using a wheelchair at the age of four, when most kids are just learning how to pick their nose. My disability is progressive, so I transitioned to a power wheelchair at the age of seven.

Third, I’d like to assure everyone at the Social Security Administration that, yes, I’m still disabled. My genetic disability can’t be cured by clicking my heels together three times. In fact, I couldn’t even click my heels together if you asked me. Because, yes, I’m THAT disabled.

I need help with all my daily needs— like getting out of bed, showering, getting into my wheelchair, and cooking meth in my kitchen.

Anyway, here are a few more facts that might help you determine my disabledness. (Yes, I just made up that word. Feel free to use it, if you want.)

— I’m unable to drive, so I must hitchhike everywhere like a 1970s hippie just before they were murdered by the Zodiac Killer.

(Just kidding. Folks drive me around in an adapted minivan. You know, the kind of car that hauls around eight-year-olds and smells of stale Happy Meals.)

— I’m a patient of the Stanford Neuromuscular Clinic. I am followed by their team of neurologists, pulmonologists, physical therapists, respiratory therapists, nutritionists, butchers, bakers, and candlestick makers. My last checkup was on March 15, 2022. My next checkup is just a few days away.

— I’m attaching a copy of my health record from Stanford, just in case you don’t believe how damned disabled I actually am.

— I work from home a few hours a week as a bookkeeper. This part-time job gives me the flexibility to rest when necessary, and to tailor my work-schedule to my physical and medical needs. I can’t work a full-time job, or work away from home.

— My job pays me $600 a month. You folks at Social Security only give me $596 a month because you think I live in an alternative timeline where everything costs the same as it did in 1958. I use all my money to pay my caregivers. Every. Single. Dime. And it’s NOWHERE near enough to cover the total cost. This is why I sell my body on Craigslist.

— My lung capacity is 42%. Given my respiratory weakness, I am at-risk of severe complications from most illnesses. So, I avoid crowded, public spaces. This is a bummer, yes. But as most people kinda suck, I actually don’t miss this as much as you’d think.

— Oh, and I am unable to wipe my own butt. So someone else has to do it for me. Further, I poop twice a day. I know you didn’t ask this on the form. But, as Social Security seems to want to verify EVERYTHING about me, you might as well know this, too, right?

I guess that’s it for now. Let me know if you need me to provide anything else— like my firstborn child.

Most sincerely,

Elizabette

Ableism: The “-ism” No One Talks About

(repost from my article on the Anthesis website)

When you think about discrimination, what comes to mind? Take a moment to ponder it. In your mind’s eye, who do you picture being discriminated against? How does this discrimination manifest? Where does it happen? And, lastly, why does it happen?

I ask these questions because we all have preconceived notions about discrimination. We may think about racism. Or sexism. Or homophobia. Or religious persecution. Our shared history has taught us to recognize some, more blatant, forms of these discriminations— but, sadly, we have a long way to go to identify and rectify the consequences that have resulted from them.

But there is one “-ism” that very few people know about. In fact, if they’ve heard the word, they likely don’t even know what it means. Yet, it’s an “-ism” they’ve most likely witnessed, and, I daresay, even directly enabled at some point in their lives.

I’m talking about ableism. The textbook definition, itself, is even vague— as if the person writing for Oxford Dictionary wasn’t quite sure what it is, either:

a·ble·ism, noun
/ˈābəˌlizəm/
discrimination in favor of able-bodied people.

No offense to the Oxford folks, but this definition isn’t helpful. Yet, oddly, the sparseness— the vagueness of it— and the fact that the definition doesn’t even mention the target of the discrimination… well, that says a LOT about how veiled and insidious ableism can be.

So, let’s expand this definition a little. Ableism is discrimination against people with disabilities based on the deep-seeded societal belief that they are inferior to the nondisabled. It is rooted in the long-held assumption that disabled people require ‘fixing,” and a notion that they are incapable of being full, independent members of society. Like other “-isms,” ableism classifies an entire group of people as ‘less than,’ and perpetuates harmful stereotypes and misconceptions of people with disabilities.

Ableism can occur in overt, obvious ways— through things like abuse, direct exclusion and denial of access. But, it’s the more subtle forms of ableism that can often be the most harmful to those with disabilities.

I am disabled. I’ve written about some of my life experiences here in this blog. Ableism is something I’ve quietly experienced my entire life— but during my younger years, I didn’t have the language or the ability to put it into words. Or, to really examine what I knew in my bones to be true:

Society saw me differently than others. I was measured to a different standard. Less was expected of me, yet I had to achieve FAR more to be taken seriously. To be heard. To be valued. I had to minimize my disability and shrink it down into the teeniest box imaginable. Even if I knew I couldn’t manage it. Even if I knew it wasn’t sustainable for me in the long run.

You see, ableism demands these things of the disabled. Because being less disabled means that society values you more. You will have more access to education, employment, and economic opportunity. You will be listened to— and you will have more access to the healthcare and community services you may need.

Society perpetuates these values day after day. Ableism is baked right into the foundation of it— like walnuts in a loaf of banana bread. It’s the reason why the disabled are always one of the first groups to suffer during times of upheaval, like the COVID-19 pandemic. Ableism teaches us that the disabled are more expendable than the able-bodied. We see those values playing out right now in real-time.

There are undercurrents of ableism in the protests to masking, vaccine requirements and other public health measures. These protocols serve to protect the disabled and vulnerable, but as many of these protesters see themselves as “healthy,” they don’t see why they must do these things. They subconsciously believe their rights and their value exceeds that of others. Why do they think this? It’s not simply a matter of “selfishness” or a lack of “morality” (that’s too simplistic, and also, untrue). You see, it’s ableism that justifies this position in their minds. Ableism is what subtly reinforces the idea that they are superior to the ones they are being asked to protect.

This dark side of ableism can be very dangerous for the disabled. For that reason, it’s the one that many people don’t like to talk about. It makes folks uncomfortable. After all, society is invested in the narrative that it “takes care” of the vulnerable among us. We want to think this is true. And, while we do great things to care for others (we really do!), we still have a long way to go to achieve equity for the disabled. To achieve full personhood for the disabled.

No discussion of ableism, however, can be complete without acknowledging the added barriers and discriminations that disabled people of color experience. All the challenges of getting access, accommodation and resources are exponentially compounded for the disabled in communities of color. This is why disabled people of color are in the highest mortality group for COVID-19. Ableism and racism can combine in ways that can be deadly. We must not be afraid to acknowledge this and address it. No work to combat ableism can be fruitful without efforts to tackle these added racial disparities.

The disability community needs allies in these efforts. Our voices, alone, won’t make things change. Do you want to do your part? If so, I recommend that you learn more about ableism— and all the ways it can show up in our daily lives. My explanation above is rudimentary, so there is much more to learn. Here are a few links to check out:

Death by a Thousand Words: COVID-19 and the Pandemic of Ableist Media by Imani Barbarin

Disabling Ableism TEDtalk

What is Ableism?

This brief list is just an entry point. After all, the disability community’s experience with ableism is as diverse as the community itself. Yet, there are commonalities that bind us together. So, your first step is learning to recognize ableism when you see it— because, trust me, you will see it.

And once you do see it, you will have no excuse not to do anything about it. The power to make change will then rest with you.

Let’s get started, shall we?

https://anthesis.us/ableism-the-ism-no-one-talks-about/

Hitler, Nazis and Strudels — Oh My!

As I’ve said on this blog, and… really, to anyone in my real life that will listen, I love history. It really doesn’t matter the era or the type, I adore it all. I love learning about it… reading about it… I even love swimming in it until my fingers get all wrinkled.

Although, in the interest of full disclosure, I doubt anyone would watch me swim in anything, even history. Given my pasty skin and weak body, I’d be that one albino seal who can’t swim and gets rejected by their mother to flail on the beach and get eaten by a polar bear.

World War II is a particular favorite of mine, not because I have any affinity for genocide or dictators with mustaches, but because it’s an era in history that was so wide in scope that it affected nearly everyone on the planet— in some way or another. Even Switzerland, which had promised to stay neutral during the conflict, still managed to get ahead by selling Saint Bernards, lots of holey cheese, and hoarding money in their banks that everyone liked to pretend hadn’t been stolen from the Jews.

My own family was affected by WWII, also. My father was born in a remote, mountainous village in the Basque region of southern France during the Nazi Occupation. While my poor grandmother was pushing my dad out of her vagina, there were German soldiers literally downstairs in her kitchen. I suppose it was important for them to determine if the people scurrying in and out of the house were spies… or just old ladies with clean towels and hot water.

As much as I like true stories, sometimes I read alternative WWII history books and novels because it freaks me out. Just imagining a world where the Nazis won the war is enough to give me a giant case of the heebie-jeebies. After all, if Adolf Hitler had achieved his aim, folks like me wouldn’t even exist.

Many people don’t know this part of WWII history, but the earliest victims of Hitler’s genocide were the disabled. By 1933, the Nazis mandated the forced sterilization of all disabled persons— whom they considered “life unworthy of life” and “useless eaters.” This plan made perfect sense to the German people, yet, it didn’t seem to matter that their own leader looked like a penis with a comb-over.

This policy helped to set the stage for the beginning of 1939, when the Nazis began to murder… oh, excuse me, they called it “euthanize”… all the disabled babies, children and adults in their budding empire. Doctors, nurses and other medical staff were required to report all their disabled patients to the government. The younger at diagnosis, the better. It’s more effective to hone your death tactics on victims that can’t fight back or wipe their own ass.

Once Nazi officials received a report of a disabled person, they’d send staff to the home. Using glowing descriptions of their caring facilities, they’d coerce the families into sending their disabled loved ones to their special hospitals for treatment.

I imagine these conversations sounded something like this:

“Hello, Mr. Schneider. We’ve got a brand new medicine that we’d like your son to try. It’s amazing… transformative.”

“Really? What is it?”

“It’s sort of a gas… an… an inhaler, if you will. It’s called Zyklon-B. It’s like… penicillin… only better.”

“Oh, wow. How much will it cost? I— I don’t have much money.”

“Don’t worry, Mr. Schneider. It’s totally free.”

“Thank you so much.”

“Oh, don’t thank me… You can thank the Führer for this generosity. By the way, does your son like strudel?”

Then, after some time had gone by, they’d send the family a letter notifying them of the death of their child or relative. Sometimes it would include a box of cremated remains since the Nazis loved dispersing ashes even more than the Catholic Church on Ash Wednesday.

These letters to the families always included a fictitious, yet, somewhat believable, cause-of-death. Like pneumonia… or fever… or choked on a cherry strudel.

To be honest, choking on a cherry strudel sounds like something that I would totally do. Yes, I love baked goods that much. So, unfortunately, my family would have probably believed it if a Nazi doctor had told them that’s how I met my maker.

Their scheme worked remarkably well for years. While some families grew suspicious, on the whole, most people believed what they were told. And the Nazis were outstanding propagandists. They had laid the groundwork for years ahead of time— making it known that these undesirables were better off dead, anyway. This made it less likely that anyone would go seeking answers.

As you can imagine, I am thankful, everyday, that Hitler’s grand-plan eventually fell apart. Not only for myself, but also for my grandmother that had to contend with German soldiers worried about the contents of her uterus.

But, while the man, himself, may be dead, Hitler’s philosophies do still live on. May they never rise up again, though. Because, if they do, I might need some cherry strudel.

IMG_5208[2029]

After Hawking

“The downside of my celebrity is that I cannot go anywhere in the world without being recognized… The wheelchair gives me away.”

— Stephen Hawking (1942-2018)

The passing of theoretical physicist & cosmologist Professor Stephen Hawking earlier this week leaves a big, gaping hole in the scientific world. A black hole, surely, of infinite size, depth and velocity— so powerful that probably only Dr. Hawking, himself, could describe it. I won’t pretend to attempt it because my scientific knowledge is limited to shit I’ve read in National Geographic Magazine. And random stuff I’ve Googled on Wikipedia.

So, yeah, I’m not very sciencey.

Professor Hawking was also probably the most famous person in the world that happened to use a wheelchair. A real-life Professor Xavier from X-Men… only with glasses and a better haircut.

For the majority of his life, Dr. Hawking had ALS— a progressive motor neuron disease. Due to advancing medical science, and the top-notch home care he had available to him, Professor Hawking’s lifespan exceeded that of many others with ALS. (Which speaks to the importance of self-managed home care for those with disabilities and why it should be more readily available— and covered!)

His life was even the subject of the 2014 biopic, The Theory of Everything, starring Eddie Redmayne. Eddie won the Academy Award for his portrayal of Hawking, which was not surprising because everyone knows that the best way to win an Oscar is to play a disabled character. Of course, the caveat being that the actor, himself, can’t—under any circumstances— be disabled in real life. Because that would be stupid.

I thought the movie was fairly decent up until the end… when a brief scene actually made me yell aloud in disbelief: “As if!”

While at a lecture to receive an award for his many, many achievements, the filmmakers inserted a moment where Professor Hawking witnesses a student at the lecture dropping a pen. The writers have Hawking daydream that he can stand up out of his wheelchair and pick it up.

Really??

A man that thinks in fucking lightyears and units of measure that literally NO ONE ELSE UNDERSTANDS is going to pause while receiving an award, to muse, “Gee. Screw science and my accomplishments. If only I could pick up this pen…”

I call bullshit.

But, you see, that’s what society would believe that he’d be thinking. Because to be seriously disabled is so scary to most people that they can’t even fathom it. To someone able-bodied, of course, Hawking would yearn to pick up that pen. But, in reality, he probably was thinking nothing of the kind.

As someone disabled, I can honestly say I’ve never seen someone drop a pen, and then lament, “Gosh, my life would have SO much more meaning if I could pick up that pen off the floor.”

Anyway, I seem to have digressed.

In the days since Professor Hawking’s passing, the internet has been awash with obituaries and tributes to him. His scientific achievements merit such accolades, that’s without question. While many of these tributes are extremely well-meaning, they miss a key element of the man that was Stephen Hawking…

He achieved everything he did with his disability, not despite it.

Stephen Hawking didn’t overcome his disability. He lived with it— achieving great things in the process. His infamous wheelchair wasn’t a trap, or a road block… it was a vital tool of life.

I’ve seen several cartoons and graphics circling the internet this week, showing Hawking drifting out of his wheelchair to stand and walk among the stars. Implying freedom. That he’s free from his wheelchair now. Free from the bounds of his disability.

Many seem to find this touching. Which is why these images have been shared thousands of times. But, when I see that, it makes my gut clench.

No matter how much Stephen Hawking had accomplished in his life, his story wasn’t complete without this magical metamorphosis. Floating free from his bonds to stand upright. To walk among the cosmos on two working legs. Because, heaven forbid anyone drive a wheelchair through the stars, instead.

While I’m not anywhere close to Hawking’s genius and epic achievements (by lightyears), as a disabled person, I’ve got a few things in common with him. His passing, and the response to it, has made me reflect upon what others may think about me.

When I die, will people think that I’m free? That I no longer have my wheelchair and disability to bind me?… burden me?… hold me back? Has my life boiled down to that?

I can say one thing for certain. If you draw a cartoon tribute of me floating out of my wheelchair after I die… or say that I’m “free now”… I will personally haunt you until the end of your able-bodied days. Not a cute haunting, either. A really annoying one where you hear whispers of “Fuck you” whilst you drift off to sleep. You’ll also never find your favorite pair of socks and your coffeemaker will always seem to malfunction when you are tired and/or hungover.

You will RUE. THE. DAY.

In fact, if it were theoretically possible, I’d come back to life, like Jesus Christ, just so that I might run you over with my wheelchair. Yes, I would definitely do that. Resurrection is a small price to pay for revenge.

So, your best bet? Don’t be comforted by thoughts that I’m “free.” Rather, please be sad that I’m dead. Okay?

Something tells me that Stephen Hawking would agree with me.

xoxo

Stephen Hawking NASA 50th

(photo via NASA)

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That 70’s Show

I’ve heard it said that fashion is cyclical. What was once in style is sure to become fashionable again— if you just wait long enough. While I’m not sure if that’s always the case, I think the cliché is more true than not.

I’ve noticed that over the last few years that the color palette of the 1970s seems to be creeping back in vogue. While I wasn’t alive during that decade, I’ve seen enough of my parents’ Technicolor photographs to verify this as accurate. You know those little square Kodak photos with rounded edges featuring your relatives with well-coiffed hair and bright floral outfits?

Yeah, those things.

I’ve been seeing lots of clothes and decor with those colors recently. And in places where, frankly, I’d prefer they weren’t. For example, a couple of years ago, I lamented a paint job that had been completed at my doctor’s office here in Patterson. When I told my doctor that the color of his building resembled the shade you’d find inside a baby’s diaper, he told me that he had no part in selecting that particular color palette. While this reassured me of his decision-making ability, that hasn’t stopped me from having to look at those colors each time I go for a flu shot.

I regret to say that this 1970s color invasion has claimed another victim. Today, I had a few errands, so I had to stop by the bank. I hadn’t been inside the bank in quite some time, so I was too busy saying hello to the nice ladies that work there to notice that the interior had undergone a redecoration. Once I was in line for the teller, I looked up and felt my nose instantly wrinkle in dislike.

My beloved bank had been painted a shade of yellow that, if seen in a toilet bowl, Dr. Oz warns us is a sure sign of dehydration.

I mulled on this revelation for a few minutes— looking around the walls as if expecting to feel differently about the color. Once it was my turn at the teller, I nearly asked her about it, but I stopped myself because I didn’t want to make the staff feel bad for having to work at a place that resembled a urinary tract infection.

However, since they are probably reading this column right now, it’s too late for me to worry about that at this point.

In conclusion, I’d like to add the following: I am not the most fashionable person. My sense of style is highly circumspect— just like my ability to walk, which is decidedly nonexistent. So, I’d take my fashion opinions with a hefty grain of salt— just as you would all the things that come out of Donald Trump’s mouth.

I’m sure these buildings and these 1970s colors are super chic— and I’m sure real, honest-to-goodness designers made the color choice. I’m also quite sure that many people must like them.

But, definitely not me.

Summer, Flip Flops, and Tony Danza

Ugh. As I sit here typing this, the thermometer is registering 95°F. It’s barely May and only 4 days ago I still had flannel sheets on my bed. And now I’m sweating and my jeans are sticking to my ass. Why couldn’t the summer heat arrive gently? Like the slow bloom of a flower… or water dribbling down a clogged drain. Why, instead, does it have to be so blunt and nasty? Like a bull, or Steve Bannon, in a china shop?

I HATE SUMMER! There, I said it. I don’t like the heat, the sun, or even the clothes. I much prefer the styles of the cooler months— my cabinet full of scarves is a testament to that. Plus, I can’t wear most summer clothes, like shorts, because I sunburn in mere minutes. This isn’t dramatic hyperbole. One time I got a sunburned in the time it took to go from the front doors of the shopping mall to my handicapped parking space— which was IN THE FRONT. Yes, I really am that white.

Now that we’re on the subject of summer attire, I also don’t understand flip-flops. They seem unnatural and highly dangerous. Why would you want to walk around on something so unstable? It’s a shoe that’s barely attached to your body. You are one thin plastic strap away from disaster. It’s a good thing that I can’t walk, because if I had to wear flip-flops in the summer, it wouldn’t end well for me. First I’d get a bad sunburn on the top of my foot, then I’d fall and break my nose on the nearest object, like a ficus plant. It would be like an episode of The Three Stooges, only less funny and less Jewish.

If all that weren’t enough, the slapping sound flip-flops make is also decidedly unappealing. Do you intentionally want to sound like a walrus flapping their hands together? Because, I hate to be the one to say it, but you really do sound like that.

Anyway, thankfully I have air conditioning to help me during these trying times. It’s currently humming in a soothing way that reminds me of those noise-canceling machines that they used to sell at Bed, Bath & Beyond next to the display of soda-making kits that NO one ever buys. The same ones that have been on sale since 2005. If you are thinking of buying one, you might want to reconsider; I’m sure those flavored syrup pods expired back during the days when Bush Jr. lived in the White House.

Those were simpler times, though, weren’t they? We didn’t have a president with orange skin and hair… and Michael Jackson and Whitney Houston were still alive— so we could listen to their music without the sad pang of nostalgia. Those also were the days before the word taxi had been replaced by Uber. Before long the nerdy folks at Oxford will just drop that word from their dictionary entirely… and a hundred years from now little children won’t even know what a taxi is, let alone that it was yellow and usually driven by strange foreign men with accents— or Tony Danza.

It’s only May, though, so I better get used to this heat. If you need me, you can find me sitting in front of the fan, grumbling… and not wearing flip-flops.