Why There’s So Little (Good) Personal Finance for Disabled People

Jess and I are both itching to write more about personal finance for disabled people.

We’re also both itching because we have autoimmune disorders.

Guys, we’re here! We’re queer! We have two X chromosomes with faulty molecular coatings!

Okay, but seriously… we’ve both been sitting on some big ol’ honkin’ article ideas about how disabilities can impact money, jobs, and life in general. Frankly, our readers have begged us for this content. The subject of disability finance has intimidated us like no other. But with the gentle urging of our awesome Patreon donors, we’re going to dive in and do our best.

July is Disability Pride Month, commemorating the anniversary of the passage of the Americans With Disabilities Act on July 26, 1990. We’re celebrating with the release of a whole month of articles on this theme.

Did we plan this in advance? Certainly not! What do we look like—professional bloggers with a content schedule?! We had a random one-in-twelve chance to get this right, and by god, we did it. May our luck hold as we try to tackle the complexities of this subject.

Coming to terms with my new reality

Sigh… I’m ready to confess some shit I haven’t been 100% honest about.

Longtime readers know I retired early, at age 35. Early retirement had been my goal since I got my first job, saw my first paycheck, and thought: the fuck?! I was questing after early retirement before I knew it had a name.

Initially, I pursued financial independence energetically. I worked days and freelanced nights. Finding ways to save money felt like a fun game.

But by my 30s, I felt… weird. Even as I was starting this blog, some part of me was losing steam. I felt muddled. Lazy.

One day, in a meeting, a coworker gently joked about the speed of my speech. “Oh, do I talk too fast?” I asked. Everyone in the room laughed like I’d said a really funny joke. Which is how I learned I spoke slowly. I shrugged it off as a regional difference. But I was bothered. As a kid, hadn’t my teachers called me a motormouth…?

The following year, I was driving with my partner, reminiscing about a TV show we’d enjoyed. “We should make my little brother watch it,” I said idly. “He’d love it.”

My husband gave me a really strange look. “Do you not remember watching all three seasons with him?”

I stared back. “No,” I said, honestly.

We drove on in silence, absorbing this. Each of us was silently tallying my mounting number of odd lapses. The dates scratched out and rewritten because I’d put the wrong year; my repeated confusion of left and right when given directions; the pauses so long the person on the other end of the phone call asked “Are you still there?”

By the time he turned to look at me again, he found tears on my face. I knew that something was wrong, and it had been for a while.

Seeking a diagnosis for my own disability

Cognitive tests showed something weird was indeed going on in my brain. I was in the high 90^th percentile on most tests (not a brag—they involve crayons). But there were a few odd outliers: a 53 here, a 37 there, and one shocking 12. I was diagnosed with ADHD—which explained a ton, though not everything.

I started to develop weird skin rashes, which I assumed were unrelated. Four doctors gave me four dismissive answers. (“You probably sat on poison ivy?” Ma’am, I don’t sit on poison ivy unless it’s Uma Thurman in 1997!) One day, I got two routine vaccine boosters on the same day—and my skin exploded. Angry red fluid-filled blisters erupted everywhere on my body. I looked like a burn victim. There were even hives on the inside of my mouth.

It was painful and scary, especially because I chose to hide it. I didn’t want to contribute to vaccine hesitancy. (I still get vaccines! Just slower, with preparatory meds!) Still, I’m grateful it happened. It gave me the vital clue that my brain fog and skin issues may have a single source in my immune system.

So that’s where I’m at today. My next stop is a rheumatologist. Hopefully they can help me get a diagnosis and treatment plan.

Ideally, you readers haven’t noticed any of this. My writing is pretty much the same, even if the process takes longer. I’ve only appeared on-camera or in-person while medicated to mask my increasingly noticeable aphasia. And we’ve rescheduled recordings around my flare-ups. What can I say—I wanted to give you guys my best!

But I’ve felt increasingly ready to open up about my situation. And Disability Pride Month feels like a great opportunity to do so.

The high stakes of personal finance for disabled people

“So how’s early retirement treating you?”

A whole lot like the rest of my life has treated me‚ just minus the paid work. I’m still struggling with plenty of things. Mainly my health issues, and the health issues of others. Is that on-theme or what?!

Still, I feel sooooo thankful I retired when I did. Because as long as I was working, I’m not sure I would’ve noticed what was happening to me. Whenever I described a strange mental lapse or unexplained physical symptom to a doctor, the first question they asked was usually “have you been under a lot of stress lately?” (A fair question, as we’ve discussed extensively.) I think most people who work full-time would nod their heads.

I do feel some fear about my future. Is the amount of money I set aside enough? What happens if my healthcare costs accelerate much faster than expected? I’ve long told myself that returning to work is always an option—but what if it isn’t?

¯\_(ツ)_/¯

I’m taking each day as it comes.

Mine is a very soft, privileged example of the kind of hard calculus disabled people have to do every day. “What work can I do? Which discomfort can I endure? Where will money and healthcare come from?” Disabled people deserve excellent personal finance advice. They need it more than anyone.

The intensely individual nature of disability

Whether it’s fair or not, some immutable characteristics of a person’s identity have a powerful impact on their personal finances. We’ve covered many of them in the past, including gender, race, and sexual orientation.

Physical and mental ability is huge too. Trouble is, disabilities are so intensely individual that universal, easy-to-follow guidance doesn’t exist in this space. Let me illustrate this with a few hypothetical examples.

• Breathany is a highly paid white-collar worker living in California. She is pregnant and suffering from hyperemesis gravidarum.
• Nicksyn is an international student in Illinois. He’s not a U.S. citizen, but he relies on U.S. healthcare, and he just injured his spine in car accident.
• Hevenleigh is a part-time barista at a chain coffee shop in Louisiana. They’ve been diagnosed with lupus. They can work sometimes, but only when their symptoms are under control.
• Brake was born blind, but is otherwise not disabled. With some accommodations he’s able to work as an analyst for the federal government in D.C.
• Shilaylee is a union steel worker in South Dakota who’s planning to retire next year. She’s been diagnosed with repetitive strain injuries from a lifetime of using the same equipment.
• Aggrocragg is a full-time server at a restaurant in New Jersey with a generalized anxiety disorder. He’s been able to “push through it” and work in the past, but that’s feeling increasingly impossible.
• Mipsy is a young adult in Florida. She was born with profound physical and intellectual disabilities, and requires full-time professional care.

These people live extraordinarily different lives. Yet they have two critical things in common: they’re disabled and unable to work right now. (Oh, and they all have fantastic names, so *three things.)

Despite that important commonality, we would give very different personal finance advice to all of them. Here’s why.

Critical dimensions of disability

The “right personal finance advice” depends on a truly ridiculous number of factors. Among them…

• Your age
• Your citizenship
• Your veteran status
• The nature of your disability
• The severity of your symptoms
• Your continued ability to do your job
• Your ability to do other jobs
• The laws of the state where you work and/or reside
• How many employees your employer employs, employfully
• The terms of your health insurance plan
• The terms of any short- or long-term disability insurance plans
• Available medical treatments
• Your support systems
• The likelihood of meaningful recovery

From our examples above, Breathany could make a short-term disability insurance claim. Shilaylee couldn’t, because work-related conditions aren’t covered.

Shilaylee could file for worker’s compensation, and get back her full paycheck with supplemental assistance from her union—but Aggrocragg couldn’t, because his mental health condition wasn’t directly caused by his work.

Aggrocragg is eligable for paid leave under New Jersey’s state-specific Temporary Disability Insurance (TDI) program. Heavenleigh’s state offers no such program.

But weirdly, Aggrocragg can’t take unpaid federal family leave (FMLA) because his employer has less than 50 employees. Though Heavenleigh can, because hers does.

Mipsy can earn up to $1,550 a month and still qualify for SSDI—though Brake could earn $2,590. Since he lives in D.C., he can access waivers for at-home care. But Poor Mipsy can’t use Medicaid dollars toward room and board in Florida—at least not until she turns 65.

… And now you know why I chose funny names for all of these people: because reality is about as funny as a bucket of cold water to the head (and we don’t live inside a Rumiko Takahashi comic). This is me, making my own fun!

It’s! So! Fucking! Complicated!

Whyyy can’t this be simple and universal?

ARUGHHHH. I’m already coping with daily brain fog. Reading this stuff feels like I’m running my brain’s car’s heater in a rainstorm. Where are we going?! Was that a bump in the road—or is this an I Know What You Did Last Summer situation?!

If you manage a difficult health condition—or provide care for someone who does—you already know it’s a logistical nightmare. You must…

• find doctors in your network who are accepting new patients
• make sure you have the specialist referrals you need to see them
• get time off to go to appointments, run tests, and pick up prescriptions
• take care of those terrifyingly large (and often error-ridden) medical bills
• do well enough at work to maintain your employment and insurance

… all while being sick! It’s fucking hard. Adding labyrinthine financial benefits, work requirements, restrictions, and tax loopholes is like adding poop-flavored sprinkles to a shit-flavored ice cream sundae.

I really want to say “it doesn’t have to be this way.” But even with massive, needed reforms and improvements, I believe this system will always be complex. Because disabilities, and the lives and needs of people who have them, are complex too.

What’s the next step?

When I realized my brain wasn’t working right, I didn’t know what to do next. Here is the path that I ended up taking (bear with me…):

• I asked my regular doctor for help. He ordered a blood test, which came back fine. So he referred me for something called neuropsychological testing.
• I used my insurer’s website to find doctors in-network with that specialty, and booked the test. After the tests, they handed me a diagnosis and another referral for someone who could give me medication, and I booked an appointment with them.
• Finally, I had that sweet, sweet Adderall. (No, the pills are literally terribly sweet, it’s disgusting.) With medication, I got a little more energy and clarity. I cast aside my skepticism and did all the stuff they tell disorganized people to do: exercise, eat well, write everything down. I joined a few Facebook groups and subreddits for ADHD women, and learned a ton from them. Many areas of my life improved (unread emails in inbox), which made the areas that didn’t improve more obvious (rashiness of skin).
• The helpfulness of those subgroups led me to seek out other subgroups for my skin issues. Holy shit: I found people just like me!
• Whatever worked for other people that was easy to try, I tried. I found myself taken a lot more seriously in medical appointments when I could honestly say “yes, I’ve tried that” to all of their first-tier suggestions. (Second tier is so much better. Second tier is when your insurance has to cough up a few grand to run cool tests that establish you’re mildly allergic to cockroach dander and nothing else. Guys, is it a flex that my body has such refined taste in allergies?)

So now I’m waiting for a rheumatology appointment, confident this is the right direction. Or at least closer-to-right. It’s almost pathetic how roundabout everything is. But I want to suggest that under our current system, I think this is exactly the way to get the help you need.

You find specificity by building it

Whether you’re seeking answers in medical or financial systems, the complexity of those systems is your enemy. What you need is specificity.

Not having answers feels like trying to put together a thousand-piece jigsaw puzzle from, like, four pieces. Out in the general population, you’re mingling with people who are trying to put together totally different puzzles—some of which are four-piece puzzles! Surround yourself with people who are working on the same puzzle, people who share your limitations and struggles. Once you start finding edge pieces, you’ll be off to the races together.

I essentially have two recommendations to find this specificity.

First: if you’re hungry, open your mouth and ask to be fed. When you don’t know even the first step to take, the first step becomes telling someone “I don’ know what to do.” They may not know either—but they’ll know someone, who knows someone, who read an article, and there’s a comment in the article that leads you to a support group, and the support group connects you with the guidance you actually need. At least, that’s how it’s worked for me.

Second: find your people. This blog is a space for people who’re interested primarily in personal finance. More specifically: people who hear “money me, money now, me a money needing a lot now” and burst into weepy applause like a turbulent plane just landed safely. We will teach you whatever we can about personal finance, which includes a good deal about healthcare and intersectionality. Find your disability community and carry this knowledge into it. Together you can synthesize this knowledge to achieve the level of specificity you need for it to be legitimately helpful.

There’s more coming soon

Obviously today’s topic was partly personal, partly a very high-level overview. We’ll be coming at you later this month with our best attempts at giving disabled people specific, actionable financial information. We’ll be talking about SSDI, disability insurance, fiscal policy for disabled people, and more.

Today, I’ll ask: have you ever found a really helpful community support group for your specific disability issues? If so, please drop it in the comments below! I’d love to use this as an opportunity to connect people. I’ll do the same. And if we get enough entries, we could start us a lil’ master post!

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