disability

Content Note: This story is a work of fiction. It humorously discusses euthanasia.

I’m writing this from my $20,000 wheelchair that sits inside an overpriced one-bedroom apartment I can barely afford, in one of the country’s biggest cities. I need this $20,000 wheelchair to get from one room to the other room. From the hallway to the elevator, and from the lobby to the street. I need this wheelchair to live my life. Without it, I would be stuck in one spot.

In the same $20,000 wheelchair sits another disabled millennial guy. The only difference between me and him is I won the genetic lottery, which is a pretty ridiculous statement given that I have a 1-in-10,000 genetic disability that renders me with less muscles than an average toddler. My flappy body flopped out of the sky and into a city with more public homecare programs than the city that his flappy body landed in. 

That has made all the difference. 

The Other Guy (Like me, but not me)

This is a fictional story about this Other Guy. Instead of an apartment in a city, The Other Guy lives in a room in an institution. It’s in a town just around 80 miles from where he was born. It’s close enough that his mom can come visit him on weekends, which she does, but far enough that his childhood friends could forget about him, which they do. And with his $20,000 wheelchair, he remains in that room.

Well, not like always in that room. On occasion he visits the cafeteria, or his friend Andrew’s room down the hall, or the vending machine by the reception desk that is technically for the staff but doesn’t discriminate against the crumbled $5 bills his mom leaves for him. Back when his mom had the minivan, she would bring him to the mall sometimes. Despite his pleas not to, she sold it to pay for repairs to the $20,000 wheelchair. Now he hasn’t left the institution’s campus to visit the mall in almost two years, and it felt like forever. He wondered how it was holding up, as it seemed a little barren during that last visit.

Like decaying shopping malls, the other patients in the institution are often talked about as if they are “past their prime”. He, however, is too young to be in a place like this, at least according to Andrew, a fellow resident who is probably 50 years older than him. Without 24 hour homecare services though, he can’t move out from the facility.

He eagerly awaits every mail day with the hope that a blue envelope will arrive telling him that of the over 600,000 people waiting for a waiver for HCBS (home and community based services), his wait is finally over. To him, with little to lose and a lot to gain, each navy envelope felt like a lottery ticket, with the jackpot being life outside the institution walls. 

Mail Day

One Sunday morning, his mom arrived with Dunkin’ bagels and a stack of his mail that had been piling up at her house. As the two talked about his remote-job applications, and her in-person-job applications and whether or not cream cheese needs flavors (they both agree it doesn’t), a nurse entered the room to mention that a new “healthcare vendor” was visiting the facility and wanted to meet with patients like him. He hated being referred to as a patient, but he was rather patient with being called one, and agreed to meet with the mysterious visitor. When you spend every day in the same walls, any guests, even the strange pharmaceutical sales representatives, are a welcome distraction.

After disposing of a thousand credit card applications, expired coupons for Hello Fresh, and a birthday party invitation for a party that happened yesterday, there was one piece of mail left. Through the transparent window on a familiar navy blue envelope he saw an all-caps wordmark reading “STATE HOME MEDICAL SERVICES.”

The envelopes always had a small window, something his facility room did not have, and they reminded him that this place was intended to be a temporary stop until he was approved for the homecare services he needed to live within the community. After several years and 4 losing envelopes however, it was starting to feel less temporary.

With a pathetic little drumroll on her lap, his mom opened today’s lottery envelope. When the letter began with “We regret,” he knew it was a losing ticket, and he was thereafter informed that his appeal for a secondary appeal for a tertiary appeal for a temporary homecare re-evaluation was denied. This time, the state explained, they did not receive the needed paperwork, or they did but it wasn’t filled out properly, or maybe the waitlist for such re-evaluations wasn’t currently open. It didn’t really matter why, because the rules made no sense to begin with.

Later that day, the two were snacking on a bag of stale pretzels that had been found under a different absurdly rotund pile of paperwork. As he bit into the hard pretzel, he remembered that last mall visit. “I would kill for some Auntie Anne’s right now,” he joked. 

“Oh, that closed,” said his mom, knowing immediately which of several-thousand Auntie Anne’s locations he was recalling. “They closed. Toy World closed. Taco Taco Taco closed. And that lady that used to sell the painted jeans? Closed her booth too,” she added. 

“Well, hopefully something new and fun moves in,” he said, pretending to be optimistic about the mall’s inevitable demise. “Or if it all flops, we can start squatting in the property and turn it into something cool. It’s already so spacious and accessible! Maybe we could give each storefront to one of the residents here to turn into something new, and you can finally have that poetry cafe you used to always dream about. 2030s mall culture is coming; you’ll see.” 

Where many saw only the end of an era, he saw the potential for a new one. As they continued  plotting their shopping-mall-turned-disabled-artist-commune-fantasy, a tall man in a polo shirt  appeared in the doorway. 

“HELLO!!!”

the man nearly screamed, as he stood like a vampire waiting for his invitation to enter. 

“Oh, hi, come in,” he told the man who swiftly stepped across the boundary.

The man had a high-pitched voice and spoke quickly, explaining that he represented a new healthcare start-up called “Smooth Sailing Solutions™.” He pointed to a small sailboat embroidered on his shirt, saying that while he didn’t have time to explain all of their services, they were designed specifically for clients with disabilities like his, and that they were pre-approved by nearly all insurance providers. He then pulled out a colorful pamphlet with the same sailboat on the cover, scribbled his phone number on the bottom, and ran out to the next room to repeat his ritual.

As the Other Guy and his mom looked at the pamphlet, the Jeopardy theme music began playing at a distractingly loud volume from a television down the hall. The pamphlet had a cursive title reading, “Smooth Sailing Solutions: When it’s time to say Bon Voyage.”

In a much smaller font below it read, “Euthenasia Services for those with terminal conditions or life-burdening afflictions”.

Bon Voyage?

“Is this some kind of fucking joke!?!” his mom let out as she took the pamphlet and threw it to the side. As it flew across the bed, a paper insert fell out that made him chuckle. On it was an AI-generated image depicting a boat full of seniors wearing sailor outfits so corny it looked like Donald Duck cosplay. They smiled and waved as the boat ascended upwards into a cloudy sky. 

He pointed to the image and chuckled. “You always say I look good in navy blue, you don’t think I could rock an ascot?”

His mom found the pamphlet less funny.

“What kind of treatment is euthanasia? That’s the best they can give you? The same insurance company that can’t give you the basic services you need to live just pre-approved that maybe you could just DIE? I’m going to find that man and tell him this is shameful!”

No amount of nautical nonsense could cheer up his mom, despite his very best efforts. “I always said I wanted to go on a cruise one day, and to fly one day, and it looks like this boat does both!”

“This isn’t a joke,” she quipped back.

He knew that these assisted-suicide services existed because he once saw an article about them on Facebook, but it was paywalled, so he never read it. He assumed the article was about some far away place like Australia, or Canada, or the cult land in Midsommer. Here it was showing up in his country – a country he was constantly told was great for disabled people. It seemed the country wanted him to die along with the malls.

As his mom started to storm out of the room, the nurse from earlier came in to address the yelling. “Miss mom,” she began her plea, as she often did when his mom wanted to stay past visiting hours or asked for an extra pillow, “I need you to use your inside voice so as to not disturb the other patients.”

She did not use her inside voice. “Do you know what that sick man is selling? DEATH! He’s selling death! To children! How could they – how could you – how – but – you’re a mom too! I know you are!” 

His mom continued to yell, both at everyone and at no one. The vampire-euthanasia-salesman had long left, but it was clear that her rage wasn’t even truly intended for him. It was for the slimy hypothetical office guy who sent him. The nurse took the brunt of the yelling, because she was the closest person to yell at, but she barely seemed bothered.

In her much softer voice, the nurse responded. “I understand you do not approve, but these things – it’s a part of life. It’s medicine, really, and nobody lives forever. I would never suggest this stuff either, but sometimes there are no good options. Besides, your son, he’s an adult, he can read the pamphlet, and he can throw away the pamphlet, but that is his choice.”

He liked the way she emphasized his adultness, but framing it as a “choice,” made him uncomfortable too. 

There’s something about the word “choice” that makes it seem as if there’s pros and cons to either side, as if the options should be carefully measured, and as if each had validity. The “cons” of his life, he assumed, were the thousands of dollars and hours that were being used to sustain his unnecessarily mundane quality of life. 

It felt almost greedy to want to not be murdered by a doctor. 

Still, he was fortunate enough to have his mom, and his family, and even Andrew down the hall, all of whom would obviously prefer him alive. He himself also preferred himself not dead, (I prefer him that way too.)

“Can you imagine!!” his mom was still flustered. “What if I wasn’t here, what if someone pressured you, what if–”

“RELAX, I DON’T WANT TO DIE,” he tried to project towards his mom, still laughing under his breath. “I’m not going to ‘Bon Voyage’ anytime soon.”

“I know but that’s NOT THE POINT. It’s the principle! It’s like they think this is okay, like, like, like, like, they think, they–,”

“Mom, calm down. Relax.”

“CAN Y’ALL BE QUIET I’M WATCHING JEOPARDY,” yelled Andrew from down the hall.

“I would never want those services for myself or my loved ones” repeated the nurse. “But I understand why some people would choose them, and I believe they are entitled to that decision.” 

“But all life is a gift!”, snapped his mom. “What if they’re mentally ill? What if they’re a teenager? Or what if they are just having a tough time and don’t realize that the universe has a beautiful surprise for them right around the corner? We can’t offer things like this without planting these evil seeds in people’s minds telling them that this is ok.” She spoke so emotionally that her arms were swinging as if she was being puppeted by a remote televangelist. “We only get such a tiny, tiny time on this Earth. And to throw even a day of that away is worse than any vice or crime or sin.” 

“Mom, it’s not about sins, it’s just… it’s complicated. I don’t want to do this stuff obviously, but I don’t know. Other people, well maybe their pain is just so bad. Remember when I had that surgery, and I couldn’t sleep for like four days because no medication would help? For some people that’s every day! And who are we, people in less pain, to say no, they need to suffer, forever, because we think it’s the right thing to do? But yeah of course, not like for kids, or like just people who are depressed or whatever. I don’t know. It’s complicated.” 

His opinion went back and forth, partially because he had internalized guilt about the sacrifices his family had made for him, and partially because he never read that paywalled article. He hadn’t thought about the ways these services would inevitably be immorally pressured by corrupt economic incentives. 

(I on the other hand spent the $2.99 to read it, and am aware of the many ways it has been and can be used simply to save some dollars, so I can proudly inject my take: fuck “assisted dying.” It’s evil and I hate it. In a pretend world where everyone has access to high-quality healthcare, we could theoretically debate the merits of elective mortality, but in this world we live in, it will always be used to put pennies over people, and that should not be tolerated. Ten thumbs down.)

While the three of them (and occasionally Andrew) bickered and debated about the ethics of euthanasia, the emotional temperature began to settle. The volumes of voices reached an equilibrium, but there was still a sense of unease, like at the end of a bad movie or a good play.

Still, the three in the room could not reach a consensus, and they talked in circles until long after the vampiric man had sailed out of the institution. Eventually the conversation drifted into another, the sun began to set, and everyone stayed alive for that night and many more.

Tomorrow (and every day after)

The next morning at 7:15, the same time as every other morning, he got into his wheelchair. He wished he could stay in bed a little later (like I can) but his routine was determined by the staff’s shift schedule. 8:30 was breakfast (tolerable), 12:30 was lunch (usually gross) and 5:30 was dinner (always gross). In between meals he plays on his phone, or applies for remote jobs, most of which end up being scams. After dinner he sneaks over to Andrew’s room to watch Jeopardy, gets in bed around 8pm, and prepares to do it all again the next day. On weekends, he eagerly awaits his mom and his mail, hoping the next navy blue envelope is his ticket out.

One guy, One Wheelchair 

When I wake up and get into my wheelchair, it’s anytime between 6:45 and 11:30, and my meals adjust accordingly. I also play on my phone, and watch television, but I have the freedom to do much more, and I would never spend a beautiful night in this city watching Jeopardy. There are a lot of dollars and care-hours spent to make that flexibility possible, and I hope the big state insurance man in the sky continues makin’ it rain so I can keep that. I rely on these services. However, even in a relatively wealthy, “progressive” city, there has never been a year where my benefits weren’t suspended or challenged. For me, getting that navy envelope is scary, as each feels like an attack on the sparse benefits that I somehow manage to receive.  

Still, each day we both wake up and do it all over. Let’s just hope that the Other Guy receives the next navy blue envelope before I do.

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Steven is a designer and humor writer with Spinal Muscular Atrophy, and the creator of Squeaky Wheel Media, a nonprofit organization for disability comedy. He lives in New York City, spending his mornings drinking iced coffee and his evenings binging television and going to see musicals. As an advocate for authentic representation in media, he created The Squeaky Wheel to amplify disabled voices, bring humor to the nuances of living with a disability, and express how comedy can be used as a force of social justice.

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