Not a “Great” year, so far.

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Here’s a list of just some of the policy changes that have impacted my life in the last nine months.

  • The massive $1 trillion in Medicaid cuts passed by Congress: in anticipation of these cuts, states have already begun to restrict eligibility for services. Just recently, I had to surrender my financial autonomy & independence just to keep the vital caregiving assistance that allows me to go to the bathroom, take a shower, and do all my daily tasks. As the Medicaid cuts take further effect, I anticipate my caregiving hours will be reduced, and I will have less care and support.
  • I had been scheduled to begin two new groundbreaking treatments for my Spinal Muscular Atrophy in December. These treatments had been in the works for years and the data shows great results. Last week, the federal government delayed the approval and shocked our entire community of doctors, researchers and SMA families. No word on when/if I will be able begin these treatments. (I suspect, given the funding cuts to Medicaid and healthcare, the government doesn’t want to pay for these treatments and decided to kick the can down the road.)
  • The federal government cancelled Rare Disease Day in DC. This worldwide, annual event promotes awareness, support programs, and clinical research into rare disabilities, like mine.
  • This week, the federal government revoked the policies that force airlines to protect disabled passengers in wheelchairs. Corporate airlines lobbied this administration to slash these protections to save themselves money and effort. It worked. It will now be more dangerous for disabled people, like me, to travel. This is a reversal of hard-fought disability rights.
  • For “budgetary” reasons, many states are fighting to erode the federal protections of Section 504 for disabled adults & children in schools. This is an assault on the progress we’ve made to improve disability inclusion. The dismantling of the Department of Education (which enforces these policies) will make this worse.

I’m sad and tired of these systemic efforts to slash vital programs, services and policies that help my disability community.

What has our nation become? What’s next?

The Tale of Three Jobs

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When you’ve got a significant disability, like I do, you often have three jobs. This makes sense, right? In 2025 America, no one has only one job anymore. Who do they think we are… Boomers?

So here’s a rundown of my jobs. Please note that none of them are with Uber, DoorDash, or the Department of Government Efficiency.

JOB #1

This is my actual job. The thing I do that makes me money (but not too much money). It’s important to note that the amount of money a disabled person can earn is limited. For me, it’s $967 a month. Yes, I know that’s equivalent to a wage from an 1800’s coal mine. It’s a pittance. Especially in our economy where you need a reverse mortgage to buy eggs. But at least I won’t get black lung at 29 and leave behind 7 children to die in a Dickensian hellhole.

I cannot earn more than the prescribed amount. If I do, the federal government will slap me with a hammer and scream: “WTF! YOU ARE NOT DISABLED! STOP FAKING IT, YOU LIAR!” Then, they will take away the meager disability benefits that I receive. For me, that’s also $967 a month.

In case you were under any delusion, being disabled is not a lucrative enterprise. We’re not rolling in cash. We’re not dropping Benjamins at the club like Diddy in the 90’s. We’re lucky if we’ve got extra cash to buy the name-brand “soft” disposable underwear instead of the cheap store brand. After all, peeing your pants in comfort is a luxury for people who aren’t disabled.

JOB #2

This is the administrative/logistical job that a disabled person has to undertake that allows us to… survive? It’s the minutiae of disabled life. It’s the doctor appointments, wheelchair repairs, medication management. It’s the arduous bureaucratic tasks of dealing with insurances and government benefit requirements. It’s the complications of coordinating homecare. And ALL the other assorted stuff that needs to be done. I’d like to point out that Job #2 is the most time-consuming of all my jobs. If I got paid for all the time I spent on it, I’d have PLENTY of money for the fancy paper underpants. The good shit with the soft pink flowers that hug my thighs like a cloud.

JOB #3

This is the most unexpected job of all. This is the extra labor that disabled people like me must do because OTHER people (often medical professionals) don’t know how to do their jobs. This work is unseen, unrecognized, and sometimes… super weird.

There is a widespread belief that healthcare workers are trained in how to handle/assist disabled patients. That their education includes disability awareness and information. Well, I hate to be the bearer of bad news, but that ain’t true. At all. In fact, the most ridiculous things I’ve EVER heard said aloud have come from one of two places. The mouths of healthcare professionals. And the mouth of the dude that lives at the White House.

I once had the following conversation with a cardiologist at an initial consult. (Note: I did not return to see this guy again.)

Me: “Do you have any disabled patients?”

Doctor: “Err, yes… so many. You can trust me. Definitely.”

Me: “Okay. So, what are your questions for me?”

Doctor: “Where do you sleep?”

Me: “In a bed.”

Doctor: “What do you eat?”

Me: “Food.”

Doctor: “How did you get here?”

Me: “I flew in on a magic carpet.”

I wish I could say this was a joke. Or an isolated incident. But stuff like this happens to me ALL the time. I’ve been asked if I can talk… write… read… and do basic thinking. It’s super fun.

At the same time, though, people like me are silently expected to provide lessons and ongoing encouragement to healthcare workers on how to treat us. All because people aren’t trained (or can’t be bothered to learn on their own) how to do so. Often, we must undertake this extra labor in moments of sickness, exhaustion and vulnerability. Because, if we don’t, we won’t receive the care we need. And that can mean the difference between life and death.

Sometimes, though, our efforts are met with resistance. Sometimes healthcare professionals don’t want to admit to their ignorance. They don’t want to ask for help. And it’s these folks that are my favorite targets.

The other day, I had a cardiac ultrasound as part of a routine checkup. When I arrived, the ultrasound technician took a look at me and I saw fear flash in his eyes. I’m well accustomed to this look. I am a boogeyman that ushers stress, despair, and way more work than an ultrasound technician wants at 1:40pm on a Wednesday afternoon.

But, just as quickly as that look arrived, a confident bravado slid down his face. His chin lifted in defiance. Nonetheless, I pushed onward and automatically began to offer him the information he would need to complete the ultrasound. Specifically, I tried telling him that my organs are squished in my body because Spinal Muscular Atrophy causes scoliosis. But, as I was in the middle of warning him that my heart wouldn’t be in the “usual” spot, he waved off my words with a cocky shrug: “Yeah, yeah, yeah. I got it.”

I snapped my mouth closed. Inwardly, I gave a little cheer. In that moment, I knew this appointment would be nearly as much fun as the last episode of South Park.

For the next 20 minutes, I lay smirking in the darkened ultrasound room while the technician looked for my heart in all the wrong places. His frown grew larger and larger with each minute that went by. Eventually, he found my heart. (Duh. I’m not a vampire.)

But any satisfaction the technician may have felt in that moment was erased when I said, “I could have helped you find it, but it seemed like you really wanted to do it on your own. It was probably more fun that way? Like a scavenger hunt?”

My philosophy is to take joy in the little things. For me, that’s what life is all about. It’s the small things. The little joys. These moments build a full, happy life. And, in that moment, I knew that ultrasound technician wouldn’t forget me. He wouldn’t forget how I made him feel incompetent. He wouldn’t forget how those extra 20 minutes wasted finding my heart meant that he couldn’t watch porn on his phone between patients.

And that made me happy.

So, I guess Job #3 ain’t all bad, right? Some of the perks are worth the frustrations. Too bad they don’t include high-absorbent cotton blends.

Oh, well. A girl can’t have everything.

Collateral Damage

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What I’m going to write here is very important. I ask for your time, patience and understanding.

The programs that support disabled people like me are in peril. Serious peril. Since I suspect this notion will be met with confusion and denial, let me explain why:

At the end of this year, the 2017 Tax Cuts passed during the first Trump administration are set to expire. This legislation offered large tax breaks, mainly to corporations and the top 1% of Americans. This tax cut was primarily funded by increasing the national debt.

Corporations and super wealthy people have really enjoyed these tax cuts. So, they have been lobbying HARD to get these tax cuts quietly renewed this year before they expire. However, to renew these cuts, they first must figure out how to pay for it.

The price tag to renew these cuts? Around $4 trillion. Yes, you read that right. $4,000,000,000,000. That’s twelve zeros. A zero for every day of Christmas. A zero for every Apostle. A zero for every month of the year. A zero for every bulging vein that has developed on my forehead.

Now, here is where you really need to start paying attention. $4 trillion is a ridiculous amount of money. They know this. But the political/financial pressure being put on this new administration and legislative majority to quietly make this tax cut happen is HUGE. It’s bigger than Elon Musk’s ego. It’s the real reason Elon Musk is even in Washington at all.

The House Budget Committee has already begun identifying targets for budget cuts. It would be reasonable to think that every single government agency, program or department would be on the list. But that’s not the case. The number one target on the list?

Medicaid.

The program that serves the most vulnerable of Americans: the poor, the disabled and the elderly.

Sure, finding “fraud” and “wasted spending” in social programs is the explanation provided for Musk’s involvement. But, in reality, fraud and wasted spending in these departments is nominal. it’s incredibly difficult to qualify for these programs and to remain eligible. Further, efficiency and fraud offices already exist because spending money on poor, disabled and elderly Americans is something that the US Government doesn’t really like to do. We’d much rather give a blank check to defense contractors that donate generously to political campaigns.

Instead, they plan to amputate nearly $1 trillion from Medicaid. That’s a quarter of the amount estimated they need to renew the tax breaks for Mr. Musk and his friends.

A funding hemorrhage of that magnitude would be catastrophic for disabled people, like me. The Medicaid programs that provide home and community-based services, medical care, and supplemental nutrition would be thrown to the wolves. We would have to beg for crumbs and scraps in a world where we carry ZERO political clout.

Did you know that people like me can’t run for elected office even if we wanted to? I’d be putting any government assistance I receive in jeopardy. There are strict rules I must follow to qualify for the Medicaid program that helps me get out of bed in the morning and use the toilet. I could lose everything by just trying to be a legislative voice for my disability community.

That is precisely the reason why Medicaid makes such an easy target: we don’t have representation. We don’t have money to buy a seat at the table. We don’t have a corporate lobby. It makes complete sense that they come after us first. If you don’t believe that (or want to believe that), then you might be in denial about how the world works.

This brings me back to where I began. If you voted/support the new administration, I have a request of you. Do you want people like me to be the collateral damage of that vote? Do you want the legacy of this era in history to be the moment when America failed its most vulnerable?

I believe your vote was made with honorable intention. So, are you now willing to hold your elected representatives to account? Are you willing to remind them of their moral and ethical responsibility?

Your support is needed now more than ever. I know you care. But now is the time for action. Please call the offices of your congressperson, and your Senators. Tell them you support Medicaid and want them to vote to protect it– not cut it. And keep calling on a regular basis. It will only take you a moment to do this. While it may not seem like a simple call could make a difference, it does. They listen to their constituents. You have power. Please use it. It could make all the difference.

I’m counting on you.

Call-to-Action

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Dear Readers & Supporters:

The results of this election will have far-reaching impacts on the programs and services that my disability community relies upon. The heavy tax cuts prioritized by the incoming presidential administration and Congress will come with a price. Something will pay. And, if history serves, the programs that support disabled adults and disabled children are the easiest and most-likely target for these cuts. The most vulnerable always suffer in times like these. Disabled people like me are deeply frightened about what will happen in the coming years. For us, it’s about survival— and living independently in our communities and having access to support services. Others have the privilege to vote on the price of eggs, which candidate is more “Christian,” which candidate allows them to buy 7 guns they don’t need, which candidate they think “loves America more,” or which candidate will protect them from supposed boogeymen that eat cats & dogs. But, we disabled people have to worry about a budget cut that means we only get to go to the bathroom twice a day, instead of three or four times. Or, figuring out what to do when the program that provides the meals that fit our specific nutritional needs is slashed to give a tax cut to those that don’t need it.

Disabled children and disabled adults must not be sacrificed in political storms.

To that end, I have attached a copy of the note that I will be sending to all my elected representatives in the coming days/weeks/months. If you want to be part of this advocacy effort, feel free to borrow from it for your own outreach purposes. Your support is appreciated and needed.


Here is a link to find your specific elected officials: https://www.usa.gov/elected-officials

LETTER SAMPLE

As your constituent, I am writing to affirm your commitment to support and defend the rights and care of disabled Americans. I was born with a severe neuromuscular disability called Spinal Muscular Atrophy. The heavy tax cuts prioritized by the incoming presidential administration and legislatures WILL come with a price. If history serves, the programs that support disabled adults and disabled children are the easiest and most-likely target for these cuts. The most vulnerable always suffer in times like these, but you have a duty to look after our interests. The disability community must not fall victim, as they have in the past, to political whims and selfish agendas that often leave us behind.

I ask that you pledge to safeguard priority funding for Medicare, Medicaid, in-home supportive services, public education, DDS regional centers, and supplemental nutrition programs (including medically-tailored meals). These services are vital to our disability community and we are deeply frightened about what will happen in the coming years. Our lives are in your hands. We have a right to live safely and independently in our communities.

I hope you take these words to heart. We are a large and diverse community of disabled adults, disabled children, loving families, and supportive allies. We are ready to make our voices heard.

Please don’t let us down.

Thank you.

Surviving Summer-geddon

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(originally appeared in The Patterson Irrigator newspaper)

I don’t need to tell you it’s been hot lately. Or that the heat wave has been record-breaking. The signs have been obvious. Do these sound familiar?

— Your dog tries to avoid their daily walk.

— Your A/C runs so much you must sell an organ to pay the bill.

— Your children eat their weight in popsicles.

— At day’s end, you peel off your underwear with a wallpaper scraper.

Trying to beat the heat is no easy task in this town. It can be discouraging when the hot days drag on like the 2024 Election. So, I’ve assembled a list of ideas for getting relief when our Central Valley resembles the bowels of Hades.

First, head to Blues Cafe for their famous Mocha Chiller. This chocolatey, caffeine boost makes any day better. Then, walk down the street to Patterson Family Pharmacy and peruse their cute gift shop— relishing the nice, frigid indoor air in the process.

Want something more? Our city recreation department has fun stuff for kids, teens, adults and seniors— most of it NOT out in the blazing sun. For example, the Walnut Grove gym hosts drop-in pickleball games for adults. If you don’t know what pickleball is, imagine a sport where you can feel as athletic as the Williams Sisters, without needing skills or talent. It’s worth checking out if you want some exercise and an ego boost. Go to the Patterson Recreation Department website for a full list of their community activities— you won’t regret it.

If you’re looking for a more sedate option, you can head to the Patterson Library. Our librarians have fun activity days for kids— along with well-stocked children’s shelves. Adults will find the air-conditioning quite appealing; plus, there are books set in wintry months so you can escape into a world that won’t give you heat stroke. There’s something comforting about reading a crime thriller that’s set in a cold Scandinavian town. Sure, there might be a few murders, but at least all the characters are well-hydrated.

Personally, this plan appeals to me since I do everything possible to ignore that summer even exists. You would do the same if you lived in a black power wheelchair that sucked up heat like a Dyson. It probably doesn’t help that I also burn after only 3.8 minutes in the sun. (But perhaps you don’t need to know this much about how pale I am?)

Anyway, I wish you the best in beating the summer swelter. Stay safe, cool and hydrated— and be sure to check on your elderly neighbors and loved ones that are vulnerable at times like these. If you need advice, or a cooling center, call Stanislaus County at 211. They can direct you to available resources. Be well, Patterson… and wear your sunscreen!

A graduation wish for the Class of 2024

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(originally appeared in The Patterson Irrigator)

Pomp and mylar balloons. Bright, toothy smiles. Polyester blend gowns that rustle in the breeze. It’s graduation season. We can see it— feel it. Heck, we can even smell it! The flower bouquets that fill stadiums on graduation night? It’s that grandma floral smell reminiscent of a 1980s linen cabinet. While it’s musty and makes you sneeze, it’s full of love.

All graduations are special. High School. College. Each one is momentous. But the Class of 2024 had to overcome more obstacles than most. They had exams, projects, homework, extracurricular activities— but also a worldwide pandemic that upended all our lives. All teens have stressors, of course— like pop quizzes, bad breakups, and zits the size of Mount St. Helens. But the Class of 2024 had to worry about a lot more than that.

The screen of a 14-inch Chromebook replacing time in a classroom. Parents losing income to pandemic cutbacks. Cafeteria lunches with friends swapped for a cold sandwich at a lonely kitchen table. Loved ones hospitalized from COVID— some never to return home again. Short goodbyes. Sometimes, no goodbyes.

This is a LOT to deal with. When most of us were teens, our problems paled in comparison. For example, if the snack bar ran out of Hot Cheetos, you’d be convinced we were dying of starvation. If friends didn’t have enough money for a Friday night out, you’d think they had been exiled to Siberia. Does this sound dramatic? Why, yes. But what else were we to do in the era before TikTok and smartphones? We’re lucky our whiny tantrums weren’t documented for all eternity.

Unlike us, the Class of 2024 had real problems. Cancelled recitals, proms, athletic events. Rushing to the bathroom during an Algebra Zoom break, only to remember there was no toilet paper because idiots hoarded it like pirate treasure. Trying to give a presentation online only to have your cat stroll across your keyboard and flash his butthole to your entire class.

For dealing with this madness, and all the extra pressures heaped upon the Class of 2024, it seems fitting that we give these high school and college grads a special shout-out.

Graduates— we are so proud of your determination, your resilience, and for staying focused and steadfast as the world around you was so uncertain. Was it fair that this happened during these special moments in your life? &*#% no! But you pulled through. You made things happen. And we couldn’t be more honored to give you the recognition you deserve. So, enjoy it. You’ve earned it.

And, lastly, we can’t forget the parents, guardians, educators and coaches that helped the Class of 2024 get to this point. Your headaches, sacrifices and mandatory WebEx meetings weren’t in vain. So, if you shed a few happy tears on this day, that’s okay— you can just blame the flowers.

Congratulations to all!

Get your copy!

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Have you ordered your copy of my award-winning book, Murder at the Boardinghouse, yet? 📚 There are currently EIGHT ways you can get it:

1. Order directly from me (and get your copy signed!): https://subscribepage.io/eTMJkx

2. Buy from the Center for Basque Studies Online Bookstore.

3. Pick up a copy from Patterson Family Pharmacy🏥

4. Buy one at the famous JT Basque Bar & Dining Room in Gardnerville! 🐑🍷

5. Order it from Barbot Etchepare Basque Imports! 💚❤️

6. Grab it at the historic The Star Hotel in Elko! 🍽️

7. Snag one at Blackrock Wine Co. in Reno! 🍷🧀

8. Lastly, you can find it on Amazon (proceeds from Amazon sales benefit the Center for Basque Studies). 💰

Local author to sign books

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(originally appeared in The Patterson Irrigator)

Oh, my goodness, it’s been so long since I’ve written here. I’m terribly sorry about that. I hope you didn’t think something awful happened to me. Like I accidentally drove my wheelchair into a cosmic black hole that sent me back in time where I was eaten by a giant sloth. Or something even less realistic— that I couldn’t write because I was too busy working long hours for Trump’s reelection campaign.

Anyway, I’d like to state, now, that neither of these things happened. I’ve been busy with something else: I wrote a book! It all began when I heard about a writing contest held by the University of Nevada’s Basque Studies Program.

At the time, I didn’t know what I should write about, so I put it out of my mind. But then, a few months later, while sitting on the toilet taking a poop, I suddenly had an epiphany. (I’m convinced that all my best thinking happens while I’m staring at the bathroom wall.) So, I dropped everything (including writing for the Irrigator) to work on this project. I used every free moment to write. For months, I didn’t even watch Netflix (gasp!). Of course, I did take time to poop because I had to keep the ideas flowing somehow.

After I was done writing, I entered my 67,000-word manuscript into the contest. A few months later, I got an email. I had won! And they wanted to publish it into an actual book! A real book with paragraphs and honest-to-goodness CHAPTERS. Like Leo Tolstoy, Charles Dickens, Virginia Woolf and all those serious authors that we pretend to have read, only we totally haven’t.

This isn’t to say that my book resembles those classics. It doesn’t. At all. You see, it’s a murder mystery. The kind of whodunit you read on a rainy day that makes you suddenly wonder if your uncle’s old neighbor that collected copies of the San Francisco Chronicle in his garage might have been the Zodiac Killer.

The publication process has been long. But my novel, Murder at the Boardinghouse, is now finally available. It’s a thrill to have it in-print. When I hold the book in my hand, I feel a zing happiness— like it’s a cuddly kitten, a pumpkin spice latte or a coupon for a free sandwich.

I’ve always dreamed of being an author, but stringing that many words together, in a row, seemed too daunting— and, frankly, annoying. But now that I’ve done it, it makes me realize that maybe I didn’t have the right incentive. Or maybe I just needed to spend more time pooping.

Nonetheless, I’m thrilled to share my novel with the community I love— and that has supported me and my writing for all these years.

So, I will be having a book signing event on Saturday, October 14th between 11:30am and 2pm at Blues Café right here in Patterson. There will be prizes, yummy drinks, and we’ll be collecting donations for two of my favorite local groups— Friends of the Patterson Library and the Patterson Township Historical Society. And, of course, I’ll have books available to buy— and I’ll sign any copy you bring to the event that you’ve purchased elsewhere (like Amazon).

If you want to purchase a copy locally, you can do so on my website or by stopping by the Patterson Family Pharmacy. They have a great gift shop where you can start your holiday shopping, too! I hope to see some of you on October 14th at Blues Café. I’d love to connect! In the meantime, happy fall—and happy reading. website: elizabetteunplugged.com

Now Available!

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Thank you for all the excitement and interest in my new novel, Murder at the Boardinghouse. I’m so thrilled to be sharing it with you. Milesker! ❤️

Two Ways to Get My Book!

1.) The Center for Basque Studies Press is hard-at-work printing the novel and is trying their best to keep it in-stock on Amazon. Book sales on Amazon will specifically benefit the Center for Basque Studies— an organization that preserves and elevates Basque culture & history. Txin-Txin to the CBS Press! 😀

2.) I will also be receiving a large, bulk shipment of book copies in the coming weeks to sell and distribute on my website and during book signings. Proceeds from book sales on my website and during in-person book signings will support me, personally, and I am grateful for all the encouragement you’ve shown me, and my writing, over the years. ❤️ Here is a link to my website if you want to reserve your book order: https://elizabetteunplugged.com/boardinghouse/

Milla pott deneri! ❤️

Elizabette

Update: I had several questions about this, so it was suggested that I share this info with you all:… 😀📚❤️

— *All* profits from Amazon sales go to the Center for Basque Studies— towards their academic & cultural endeavors… and to reimburse their typesetting & other setup costs to get my book print-ready. However, net proceeds from sales/preorders on my website & during book signings will be retained by me, personally, as my author portion. So, if you buy my book on Amazon (which is a GREAT way to benefit the Center for Basque Studies 😀), but you *still* want to support me, and my writing, send me a tiny kudos on Venmo or Ko-Fi.

Venmo: https://venmo.com/u/Elizabette-Guecamburu

Ko-Fi: https://ko-fi.com/elizabette

— As a disabled person, I know from personal experience that an ebook can often be a more accessible format for reading. So, if you purchase Murder at the Boardinghouse on my website, but need an additional ebook version for accessibility purposes, I would be happy to provide you with that— at no additional charge.

Further, if an ebook is the only version that is accessible to you (and you wish to forgo a print copy entirely), please contact me directly. I can offer a discounted price for ebooks for disabled readers. ♿️❤️📚