Means Tested: The Reality of Disability and the Myth of Bootstraps
Every time I talk about disability benefits in the United States, someone hurries out of the woodwork to insist that it’s actually good to have restrictions on them. Someone might take advantage, you see.
This is how I know that this person has never had to survive with a disability, or if they have, they’ve been lucky enough to experience steady monetary support from a comfortable partner or family.
I’m going to use my own experiences as examples going forward, because I have easy access to myself and also have experienced both employment while disabled and forcible unemployment while seeking benefits. This does not mean I am looking for financial advice, legal opinions, or career help. I also do not assert that my situation is exactly the same as everyone else’s. There are plenty of people talking about their experience with disability and enforced poverty; I suggest you seek these stories out to find common threads and contrasting experiences.
The Beginning- HR Fights
I was physically nondisabled until a car accident on the morning of New Year’s Eve in 2016. I didn’t spot a patch of black ice, my car flipped over, and my spine broke. We were in the middle of nowhere, Nevada, driving back to our home in Washington state.
This sort of thing is never ideal, but timing-wise, it could not have been much worse. I had started a new full-time job in the technical services department of my library system three weeks earlier, so questions of which insurance covered what began almost immediately. I was not yet eligible to take FMLA, so the weeks I needed to stay home to recover were unpaid.
When I did go back, problems began immediately. I needed to go to the doctor for a new note every couple of weeks to ensure my job did not force me to lift too much, or later on force me to drive a truck and haul boxes of books. Copays racked up, and leaders began to make noise about needing to let me go if I couldn’t fulfill job duties. I was made to feel as though this was an issue of my adaptability rather than accommodation. On top of that, I wasn’t getting better. Even as the fracture stabilized, anatomical quirks meant the pain wasn’t going anywhere, and neurological issues cropped up. Did you know that leaky cerebral spinal fluid can give you migraines? So can stress. And I had a lot of it. (More in a minute.)
My boss cooked up a way for me to transfer back to public services so that I could at least stop feeling like my job was under threat and she was able to replace me with someone who could physically do what the job demanded. I was able to use a wheelchair to reduce the strain on my back and the number of times I fell, and the less physically impactful work meant I needed fewer accommodations.
At the time, stopping work was not an option. I needed the healthcare that was tied to my job so I could recover and address the new chronic issues, we needed my income to pay the rent, and we knew at some point, the hospital bill would land. It is incredibly common for disabled people to experience job-threatening discrimination in the workplace, from refusal to accommodate to exclusionary language in job titles and postings. Most employed disabled people have at least one story of fighting HR or management, even in the most diversity-friendly environments. If you’re keeping score at home: employer-required doctor’s visits cost money, physical therapy so that you can keep your job costs money, equipment and prescriptions cost money, and above all else, the omnipresent threat of losing your job is a major financial impact.
The thing about talking about my disabled finances is that everybody has an opinion, but only other disabled folks are living in the same reality. It’s a corollary to the way that people feel it necessary to find a reason to blame disabled people for their disability so it becomes something we’ve done rather than something that could also happen to them. This is about the time people start going, “Couldn’t you have found a different job? One that would accommodate you and wouldn’t have treated you like that?”
Listen. I’m going to scream. You’re going to hear it where you are. Understand that I am in a house very far away, down a gravel road in a forest, but you are hearing me as though I am standing right next to you. What’s that? You can almost make out words.
You try going through the most physically painful and terrifying experience of your life, gain a new disability and learn how to live with that, come to find out that the career you’ve loved is full of ableists, push yourself to your physical limit every day and…then add a job search to that.
Then I slap you upside the head and retreat into the woods.
The Bill Landed
So here’s where things get fun. As if systemic ableism threatening my income wasn’t enough, my health insurance decided that the air ambulance that took me out of the tiny town in the middle of nowhere to a hospital with a trauma unit was not “medically necessary”. Their argument was that I could have and should have taken a ground ambulance instead. When I pointed out that the doctor had been the one to talk about flights, they said I should have insisted on staying on the ground.
At this point, I find it necessary to tell you that I was in the hospital in excruciating pain on narcotic pain medication after the biggest scare of my life. My husband was with me, but he had been concussed in the accident. Neither of us was thinking, hmm, how can I make the most fiscally sound decision in this moment in time? On top of that, when your doctor says “I don’t have the right equipment to make sure you’re okay, here’s what I think you should do,” generally the impulse is to listen to them.
We appealed five times, and five times the insurance’s own board found it was in the right. Go figure. By the time we added the hospital stay, imaging, and the short ride in the ground ambulance to the smaller hospital, we were looking at over $100,000 in medical debt.
I was 27. Most 27 year olds do not have $100K in savings. I would argue most adults don’t, but my point is that we were just starting out as a young family and getting established in our respective careers. We had (have) student loans, the financial hit of having just lost a car, the insecurity of living in an apartment we did not own, and I’ll remind you that my job was making noises about letting me go.
Recently, the Biden administration set down rules that preclude medical debt from impacting individuals’ credit scores. This is enormous. This is debt that cannot be avoided, cannot be planned for. The American mythos is that one is meant to live within one’s means, but what happens when your limited means mean you wouldn’t survive? Lifesaving care is not a luxury. Or it shouldn’t be.
This rule wasn’t available to us in 2017, so we began to drown. We did the only thing we could, which was to declare bankruptcy. Our judge sat back when we discussed our case with him, looked at our lawyer (and you do need a lawyer in order to successfully navigate the court, which is another cost), and said, “That is a lot of money.”
There are downsides to bankruptcy. For seven years, we’ve had to rebuild our credit, get family to cosign for things, explain the situation to landlords who just see a dark mark on the ol’ background check. But it got us to a tentative state of treading water. Away from certain departments and managers at work, my career bounced back, and I was doing meaningful work I loved. And then.
Hither Came COVID
In March 2020, I got what I thought was a cold. I was absolutely worried it was COVID, because I am immunocompromised and worked in a busy public building in the precise county where COVID made its landfall in America. When I went to the hospital to have it checked at the recommendation of my primary care doctor, the attending doctor literally laughed at me. “Have you been to Wuhan lately?”
It was all I could do to stay polite. “No, but 1000 people showed up to my library the day before we closed, and any one of them might have, so maybe you could test me?”
He didn’t. He did do a chest x-ray, which looked “fine.” I looked “fine.” I never got better.
Initially I was diagnosed with fibromyalgia. It turns out, though, it’s not correct for me. As time wore on, even the limited time I was working in the shut-down library made me so tired I would have to sleep from the moment I got home to the moment I needed to get ready for the next shift. My heart started doing weird things, escalating to 160 bpm, skipping beats. And it came out that there were a group of people who had COVID with the same deadening fatigue, cardiac symptoms, brain fog, full-body pain, dysautonomia, and most worryingly, decreased immune function. It was long COVID with its comorbid pals, myalgic encephalomyelitis (ME/CFS), POTS, and MCAS.
The Crip Tax, or Staying Employed
With new conditions to treat, new expenses popped up. A two-week session with a rented heart monitor. New medications, some very offlabel, with at least two appointments a month to evaluate. I needed a walker to deal with the change in the way the library operated — dysautonomia meant I fell more frequently. When using the walker, I found that the fatigue doubled, which would usually mean I would just use my wheelchair. The problem with that was that pushing triggered the worst of my symptoms: post exertional malaise.
If I wanted to continue working, I needed some sort of power to my wheelchair. This seems like it should be easy enough — there are several forms of power assist and many different power chairs available. The problem, as ever, was my insurance. They offered me a transport chair. A transport chair has four small wheels and can only be pushed by a second person using the handlebars. I explained that no, I needed this for work and I needed to be able to move myself around. Their answer? “If you have fatigue you shouldn’t push yourself anyway.” It was the transport chair or nothing through the insurance.
I want to pause a moment here and acknowledge that this would be a career-ender for a lot of people, and would have been for me. I seriously considered it, because the choices were to take out a loan or stop. I tried to muscle through for a while to save, and that made me very sick. The calculus was the same — I needed the job to access healthcare to treat my ongoing and worsening conditions. So I took the loan. What ended up being most cost effective was to get a power assist system and attach it to my chair.
The problem with that was that my old chair was German and the power assist system Japanese. They didn’t talk to each other. I needed to purchase a completely new chair. It still worked out to cheaper than an appropriate power chair, but just barely. And for the two and a half years I was able to keep working after the fact, it worked very well.
There was also the issue of my schedule. Between the constant low grade anxiety of being potentially exposed to COVID again, the actual danger of catching COVID again, my need to test frequently to determine whether my constant symptoms were new or a result of long COVID, and the public’s volatile reaction to any sort of mitigations, my care team determined that I would do best with the schedule I started COVID lockdown with — three days in the building with two work from home days in between.
My workplace pushed back hard on this accommodation. Despite having made it of its own volition for months, the schedule was determined to be “an undue hardship” to accommodate. Their “counteroffer” was one work from home day and one day of forced unpaid time. I was told that because I “would not be available to work” I shouldn’t be paid — even though I would have had plenty to work on (and had been working up until that week!) from home.
I attempted instead to transfer to a branch with fewer potential transmissions so I didn’t need to work from home at all — that too was “undue hardship”. I pointed out that this was a punishment. By the rules, I had to use up all of my PTO and then take unpaid time for that forced day off as long as the accommodation would last. I couldn’t get a cold, or get injured, or heaven forfend, take a day off for a doctor’s appointment. I had FMLA still in case my back gave out, but even that had to be unpaid because of the PTO rule. I was told that I should be grateful that they extended this much and that I should “compromise”.
In effect, my pay was docked and my PTO drained because I needed my return to the building spaced out. This story, too, is not unusual. For disabled people in the workforce, oftentimes mobility aids, braces, those constant ridiculous doctors’ notes, forced leaves of absence, medications they wouldn’t have to take otherwise, physical therapy to work more effectively — these are additional costs of remaining in the workforce. Our ability to save up for an emergency after the bankruptcy was greatly diminished between this and my husband’s work restrictions, and we started living paycheck to paycheck, now with an additional monthly payment.
Omicron
In February 2022, a coworker came into work sick. She told us that she was still testing positive for COVID, but since she’d used all her sick time caring for her sick child the weeks previous, and it had been five days since her first positive test, HR had told her to come back in or lose her job.
Most of the rest of us in the building that day would test positive shortly after.
This case was much different from my first — I had to continuously monitor my oxygen levels, discontinue medication that would depress my breathing. The fatigue was crushing. Everything hurt. And just like my coworker, I had to fight like hell to keep from coming back after day 5 while still testing positive. I was hell bent on keeping from giving it to anyone else.
In a library, you see everybody. Immunocompromised folks, kids, elders, people with elevated risks, people with no insurance, people with even less of a safety net than I had. Rather than taking that seriously, management opted to decrease mitigations every time it was suggested by the state. I was dealing with even worse fatigue after my second case, worse tachycardia, even less of an immune response, and fewer and fewer people wore masks.
In July of that year, I nearly passed out four times in the stacks. I threw up every day after processing the delivery. This is the part where people ask why didn’t you ask for more accommodations? Gently, I take your face in my hands and I whisper:
Did you see the nonsense HR pulled historically? Does it seem like a good idea to incur yet more ableist nonsense at work? Does it seem like taking on more stress at one of the hardest points of my life and risking my finances further would be safe?
From August until October, I pushed for more help from my doctor, anything to make still working viable. I would come home shaking, my husband would throw me in the shower, and I would sleep miserable, pain-interrupted sleep until ten minutes before I had to do something the next day, spending my work from home day and my forced day off trembling and trying desperately to recover. In October, I went on medical leave. I was not able to come back.
SSDI
In America, there are two forms of disability insurance: SSI and SSDI. If you have ever held a full time job, you have paid into SSDI, something like you pay into unemployment. If you’ve never worked or if it’s been years since you have, you’re eligible for SSI.
Both are poverty-enforcing, but SSI is downright barbaric. At most, an individual can expect to get $943 a month. Couples get $1415. Individuals are prohibited from having more than $2000 in assets at any time; couples $3000. These figures have not much changed since the 1980s. What’s more, these rules prevent people on SSI from marrying. Since the asset limit for couples is abysmally low, marrying would instantly disqualify many recipients, and they would lose even this paltry assistance.
The judgment about people on SSI is unbelievable — people, as in the beginning of this piece, accuse recipients of “taking advantage” of the system. For what? Not even $1000 a month and subpar “free” healthcare? They’re prohibited from saving, from investing, living independently, making money from hobbies, accepting gifts. Every few years, someone will wonder why disabled people live at the poverty line, and this is it: we are forced into it. It is already more expensive for us to live. If we work, it is more expensive for us to do that. And when we can no longer work, this is what’s waiting for us.
SSDI is somewhat better, but only just. While there isn’t technically an asset limit and recipients are allowed to marry without losing benefits, the benefit is based on a percentage of what the recipient made when they could work. This means that effectively, low wage workers are forever locked into the quality of life that they had at the time they became disabled. Also, the credits we get from paying into SSDI expire over time. It is possible to be out of work and in the system so long eligibility stops and an applicant will have to switch to SSI.
In both cases, a judge decides whether an applicant is disabled enough. Navigating this system takes literal years and no one will tell applicants this, but an attorney is absolutely critical to doing it. There are many, many gotchas built in to discourage applicants — more on my experience in a bit. All in the noble name of preventing fraud — wouldn’t want someone collecting that sweet $900 payment and living large.
This is the part where I point out that is impossible. Find me a US city where the rent alone is less than $900. Now factor in medications and equipment and food. Transportation, because we still need to be able to go to the doctor, even if we don’t get anything new treated. Why? Because disability has to be recertified. That means people with lifelong illnesses have to go in and prove that yes, that illness is still lifelong. That is the case for everyone. No exemptions for missing limbs, blindness, Deafness, paralysis. Wouldn’t want someone mysteriously recovering and getting that payout.
This is inevitably where someone gets feisty. “Well, you just have to be financially smart about it. Get a roommate. Don’t eat out. Don’t have pets. Don’t spend money on anything.”
Buddy, what happens if you already have pets? What if you’re me, and you live in a high cost of living state? Moving costs money — literal months of rent. What if your condition means you can’t have a roommate? What if you were engaged and suddenly you become disabled? You feel like you should have to throw out your lifetime plans to marry your sweetheart because you would lose your healthcare that you need to deal with this disability you didn’t ask for? Does that seem fair to you?
So Why Am I Doing It?
I don’t have a choice. We’re down to 40% of what our income was in 2020. While an SSDI application is pending, you’re not allowed to work. Even if I were allowed, I couldn’t. This piece has taken literal days of effort in five minute bursts.
That’s the main thing about my disability. If I wanted to work, no employer would accept the 10 minutes of work a day I can do consistently. As it was, I couldn’t get my employer to allow me an extra break to throw up on the job. I was the facilitator of the disabled employee affinity group and a member of the DEI team — this was the most accepting place I could find to work, and it was still rotten through with ableism.
Right now, my husband and I are surviving with family help, but that’s not infinite and it shouldn’t have to be. We downsized, stopped everything that wasn’t the most essential of essential. Sorry, Fiscally Responsible Conservative, I didn’t get rid of my pets. I’m sure you think that means I deserve everything that’s going on.
What do I mean? I mean that my application for disability was rejected with a form letter in the mail yesterday. It was determined that I could still do “part of” my job in the library. I’d love to know which part they think that is, and I’d love to rock up to HR and let them know that the government says it’s cool, I can just do “part of” the job description. You know, clock in, put a book on the shelf, throw up, go home.
I’m not shocked. Exact rates of denial vary from reporter to reporter; SSA’s own numbers are not cheery. It looks very much like around half of cases fail the first time through. Most will go through multiple appeals, and ultimately a mere 31% of cases are approved.
I’m lucky. I have a lawyer who not only expected this, she planned for it, helped me respond to the extremely intrusive forms (hope all these so-called scammers love detailing their bathroom habits for some government employee!), asked automatically for an extension for some fifty pages of forms they wanted me to fill out in two days, and has already started working on an appeal.
If I were any one of the following: living on my own, unable to access someone who can help me cognitively process the forms to fill out, not an English speaker, unaware of the perils of the process, unaware that I need a lawyer, unaware that a good lawyer does not charge you unless you win, unaware that it’s expected that you will have to appeal multiple times, working with a time-sensitive condition, estranged from family/friends, homeless, a parent, a caregiver, in an abusive situation, unable to access any kind of healthcare in the meantime — I would be screwed. And these ghouls like it that way. Reagan was the one who made sure those asset limits stayed good and low and that that ambulance bill bankrupted us. And Trump’s Project 2025 wants to take it even further, adding a work requirement to disability.
I’m applying because I can’t work. The fun thing about ME/CFS is that the body does not differentiate between ten minutes of shelving books and ten minutes of thinking stuff through. I get sick either way. No, remote work won’t work. I cannot work.
If you’re going a work requirement makes no sense, you haven’t been paying attention to the fact that the suffering is the point, both in the process as it exists now and as they would make it. If you point out that these policies kill people, they will tell you they’d better hurry up and do it and decrease the surplus population.
This is what it boils down to. You can’t beat this system. There’s no such thing as a welfare queen when it comes to disability. You either get your pittance or you don’t, and even if you do everything “right” by Republican measures — if you work after you become disabled, if you make the very best choices you can with the options that you’re given, if you put off critical healthcare — it still costs more to be us. And it shouldn’t have to.
Private insurance gouging us is the problem. Low wages failing to keep up with rising costs are the problem. Ableist policy in the workplace is the problem. The terminal lack of care for our neighbors is the problem. Means testing itself is the problem. Do you know how much it costs to pay a pencil pusher to deny cases over and over again, verify that I don’t make any more than I say I do, test the veracity of everything I tell my doctor, and can you guess whether that’s more expensive than just helping people when they need it? (Hint: it is.) We figured this out in libraries. It’s costlier to charge late fines than it is to give people grace, and people are far likelier to return if they aren’t treated as naughty criminals for forgetting to turn in a book once.
But if we don’t ensure that poor people suffer for the crime of being poor, no one will want to work! That’s actually not true. In states that have tested universal basic income, employment goes up. Almost like giving people the means to seize betterment means they will. Almost like all of this crushing inequality is harmful, and when we address that, people’s lives improve.
Almost like if I had the means to focus on feeling better and not having to struggle and strain against a system that frankly wants me dead, I’d feel better. What I haven’t even touched on is that being sick is a full time job. I spend over 40 hours a week dealing with insurance, with appointments, with medications, bodily needs, accommodating myself, fulfilling arbitrary requirements for referrals — to say nothing of the hustling I have to do at the behest of the SSA. So all that shaking and throwing up and writhing in pain I was doing at the end of the day at the library, I’m now doing that at home, because remember — long COVID and its very good friend ME/CFS do not care whether it’s waiting on hold or walking a block. I’m getting punished either way.
Remember when I was screaming and/or whispering earlier? How I couldn’t have processed the idea of looking for a job at the worst point in my life, or how ableism would have kneecapped me in trying to improve the job I have? I’m going to state this plainly.
As it is now, there is nothing a disabled person could do to rugged individualism their way through the realities of disability in the United States. Even if it were possible, the very fact that we have to navigate all of this when we need rest and stability most means we are not in a position to make all the safest choices. The system is stacked, interpersonally and politically, to ensure poverty. It can change, but only if we can get people to care.
That means no more means testing. It means no more moralizing about who “deserves” help and who doesn’t. Because frankly, anybody navigating this system needs it. And it means standing up to ableism wherever it’s found. Maybe you don’t need accommodations — yet. Because that’s the thing. Disability doesn’t happen when it’s convenient. It doesn’t happen to people who “deserve it”. It is one patch of black ice, one unmasked sneeze away for all of us.