Privilege Isn't Protection Against the Cost of Disability
How you can start out with a lot and still end up with very little once your health takes a hit.
It's important to understand that when I started this journey to getting ruled capital-D Disabled is that I had the benefit of a ton of privilege.
I feel like this is going to be an uncomfortable topic to talk about because in some ways it could come off as bragging, which is not my intent. Plus we're talking about money, which is something Americans at least find icky as a topic for polite conversation.
But I want to put myself out there with these details because I think it's important to know in the greater context of what it's like to be disabled (let alone Disabled) in America. Spoiler alert: It's hard. And expensive. And even if you come into it with almost every possible advantage, it does everything it can to take all of that away.
The Privilege of a Safety Net
Part of why I want to get into my specific privileges coming into disability is that I think in many ways I was the ideal person in the eyes of those who feel that people with medical problems should pull themselves up by their bootstraps and not be so-called leeches on the government. Do it yourself! Private sector! Down with socialism! Rar!
In addition to the privilege which comes from being a white person dealing with the medical establishment, I had a not insignificant amount of financial privilege as well. To wit:
- I was employed
- Other than my mortgage (itself a privilege over renting) I had no debt
- Though I did not make more than six figures, as a single person with no kids my paycheck afforded me a more than comfortable lifestyle. I'm talking saw Hamilton multiple times on Broadway with the original cast comfortable.
- I had emergency savings totaling several months' worth of my pay
- I had health insurance through my job
- I had short term and long term disability insurance, also through my job
On top of all that, my particular health circumstances provided me with some luck. Namely that my medical problems did not require extensive hospitalization or surgery. In other words, I did not get hit with hundreds of thousands of dollars of bills. Tens of thousands, but not hundreds.
Put everything together and you can see how I, more than most, was ideally positioned to go on medical leave. I could, as I did, contact my job, invoke FMLA, and stop working without a single worry about how my bills would be paid. No government money needed! Individualism! Bootstraps! Private market! Huzzah!
The problem is this doesn't last.
I cannot stress enough how much I am aware that I have gone through this with infinitely more benefits and advantages than most people. Not a day goes by in which I do not reflect on how lucky I am - and it is pure luck of the draw, make no mistake. I've done nothing to earn these things except be in the right place at the right time.
So when I talk about how it became hard for me please understand my intent is not to say how dare this become hard for me, as though somehow I am special. But rather to point out that, other than coming into this as a billionaire, I had darn near every possible help and advantage people who are against things like Medicare For All think I should've had and it still sucked. Therefore imagine how much worse this is for everybody else.
Got it? Hopefully? Okay.
Nets Have Holes
The problem is that the safety net is meant for a brief time. The longer you're sick, the more it frays.
This is compounded because I went on leave because of mental illness. Disability insurance doesn't cover mental illness the same way they do physical disabilities. That meant my benefits were on a timer. For a physical disability I would have had no deadline to how long my disability insurance would've helped, so long as my doctors could prove I was still disabled. Because it was mental? Hard stop. My benefits ended last summer. I wasn't better yet but too bad so sad, not their problem.
Also there's that pesky issue of leave. And here's where things get tricky for me legally. So to be clear of course I'm not talking about me. I can't be talking about me, the person writing this newsletter, because there's never been a "The Brat Queen" listed on anyone's payroll in the history of ever. This is very much not me.
But if I were to talk about leave issues I might totally make up a hypothetical example of somebody (again: not me) who may have worked somewhere for over 10 years, gotten nothing but stellar performance reviews, but then, after going on medical leave, was told they didn't have a job anymore.
Again: purely hypothetical story here. Because a hypothetical situation like this might result in legal actions, and might also result in people having to sign documents about what they can and cannot say about what actually happened. Which of course I would have no way of knowing because I am very much not talking about myself.
But if someone had taken medical leave with job provided benefits such as health care and if someone lost their job because they went on said medical leave, that person would - I am totally guessing, of course - have a sudden and sharp increase in their cost of living. Not the least of which is because insurance, even when it is COBRA, is hella expensive.
Said person would also hypothetically lose any cushions and benefits which come from being employed. Not, to be clear, the disability insurance. Luckily that stays in place provided the start of leave happened while still employed. But all other benefits from having a job are gone. So, other than the disability insurance, every part of that safety net goes away. But, as mentioned earlier, the benefits from that are on a tight deadline. So they do go away quickly, just for other reasons.
Again - hypothetically.
Back on talking about myself, there's also the matter of cost of treatment. Health insurance covers some but not all under the best of occasions and even less when it's mental health related. So savings comes into play to help pay for things like outpatient treatments, specialists you need to see but who aren't under the plan, testing that isn't covered by the plan, and so on.
And all of that is under the best case scenario where the only expenses digging into emergency savings are the medical ones. It gets worse when your air conditioner breaks, and then your fridge, and then your other air conditioner breaks, and so on.
Now I'm Here
Put all of that together and that is how you get from where I was to where I am now: On social security disability, Medicare with Medicaid, and food stamps.
And that was with damn near every possible advantage.
Imagine how fucking horrifying this is for people without any of that.