Not a “Great” year, so far.

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

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.

A Letter from Quarantine…

Hello Family & Friends!

Greetings!… just wanted to give you an update on me & my COVID19 prepping.

As you might have guessed, I’m in the highest risk group for this virus. Two weeks ago, my doctor advised me to self-isolate for my own protection— which I have been doing. Given the muscular & pulmonary weakness that comes with Spinal Muscular Atrophy, my mortality rate for COVID19 would be elevated. I’ve limited visitors & each person entering my home must be symptom-free & must wash their hands for 30 seconds. (They also must be able to juggle and play the lute.)

My anxiety is really high. No matter how mentally prepared you are, it’s still tough to process this life-threatening reality. Just like it’s difficult to process why everyone is hoarding all the toilet paper. COVID19 is a respiratory virus, not explosive diarrhea. (We’re not all going to die of dysentery like on Oregon Trail.)

But, nonetheless, I’ve settled in at home for what will be a long, loooong period of months. Having SMA has taught me many things… the main of which being the ability to plan & organize. And to rationalize.

I’ve got a respiratory arsenal on-hand— all the gizmos that help me stay healthy. I am better equipped to handle COVID19 in my own home than most hospitals. And that’s a fact.

Frankly, I’ve been preparing for COVID19 my entire life. This is the crazy scenario those of us with SMA plan for. (Too bad ya’ll with normal-working bodies can’t do the same!!)

What we’re doing right now, as a country, is trying to slow the spread of the virus. It’s called “Flattening The Curve.” So, these next weeks, my risk of infection are actually lower. I know that sounds weird. But, it’s true. (Ya’ll are washing your hands so well at the moment, that I secretly wish you’d do it every flu season!)

I mean, really.

But, this sustained diligence won’t last. Once the curve is hopefully ‘flattened’ by all these extreme measures, that doesn’t mean the virus stops circulating. It will keep going in the months after that.

People will eventually get complacent… they’ll stop washing their hands so much & these serious public containment measures will lift.

And, that’s when the chance of me catching this will increase.

So, when you think about COVID19, remember this important fact:

This is a marathon, not a sprint.

When I think of COVID19, I’m thinking in terms of months. Not weeks. Many, many months. I’m calibrating my brain to this reality. So, be sure you do the same.

Tell your friends that these drastic measures now are to slow the tide of infections… so that science & the medical system can keep up— can save lives.

My goal is that by the time COVID19 comes to me— whether it be in 1 month, 3 months, or 6 months, science will have more data on this. That protocols of treatment will be figured out & implemented. I’m in an online group with SMA people from around the world. We are sharing data, ideas, and science with each other— in realtime. And once people with SMA start getting COVID19 (which will happen, eventually), we will learn from each other how to fight it.

In the meantime, I’ll be here, playing the “long game.” Keeping my contingency preparations in motion… and spreading awareness in every way I can.

So, if you need me, you’ll know where to find me! ❤️

Elizabette

P.S. Don’t suck. Be smart. Wash your hands.

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