Me, with friends, at least once a week, after an awkward moment in which I’m revealed to have far less money than they do:
“But you’re on disability, right?”
(Cringe, involuntary clenching of butt cheeks) “No.”
Every time, I want to scream “Read a book!” But how can I blame my friends when it took me 7 years to understand the answer to that question myself?
I’ve wasted an unholy amount of time and emotional energy trying to “go on disability.” The institutional barriers to understanding the program cause others like me try to access it, providing job security for the legions of employees in greige cubicles whose job is to shoot down our applications. This delays access for those who actually qualify, which ensures that everyone who touches an application gets exposed to levels of stress and frustration that would explode the brain like a cartoon character’s.
I’ve learned that people have a lot of preconceived notions about disability, notions that are either wrong or out of date. First of all, there’s no such thing as “partial disability.” People think there is, because it was actually a thing until the early 1980s. You could be declared, say, 50 percent disabled by your doctor. The expectation in this case was that you would work a 20-hour week (assuming that’s even possible in your workplace), and in addition you would receive half of your individual full disability amount (as determined by your age and salary history). That’s gone. It’s all or nothing now. You have to prove that you cannot work enough to produce “substantial gainful activity,” or SGA.
Every year the dollar amount that constitutes SGA is adjusted. This year it’s 1,180 per month. It’s an arbitrary number. If you are a professional contractor like me, and your profit-and-loss wage is roughly $35 an hour, SGA means you work 8 ½ hours or more per week, usually sitting in a comfortable chair and not dealing with customers face to face. However, if you were a minimum-wage employee, say, at McDonald’s, SGA means working 20 hours per week, on your feet, running orders at best and mopping floors or washing grease traps at worst. This income standard is uniformly applied to all workers, regardless of working conditions. This is actually an advantage to low-wage workers, as few who apply for disability could manage a 20-hour week. The point, though, is it’s not an equitable or meaningful number, nor does it take into account what you have to sacrifice in order to earn that amount and whether or not it’s sustainable. For example, there are many people working jobs they shouldn’t be, jobs that are tearing them down physically and perhaps contributing to opioid overuse (see last week’s post https://blogs.psychcentral.com/hidden-disabilities/2018/02/the-opioid-crisis-a-dissenting-voice/), and they apply for disability so they can quit. The fact that they have already been working this long works against them. If you’ve been doing it, they say, you can continue to do it. These are the cases where a lawyer or representative might actually do some good in convincing a case worker that your application has merit.
Your date of disability is the year you first failed to achieve SGA. When I was hit, I was almost three quarters through a normal year. Well, normal is a relative term; I lost my job in 2009 and was self-employed for the first time. I took an income hit, but I was still well above my county’s median income for that year. The following year, which I spent mostly in rehab, I made even more than in 2010. How, you ask? This happened because I was in the middle of a major project where most of the institutional knowledge was in my head. My project team was willing to do anything to accommodate me. They thought nothing of making a dozen high-level people reschedule a meeting to the afternoon so I could ride down to Seattle on the Amtrak (I could not drive that far). I was on loads of pain medicine and able to push myself harder than I was in subsequent years, when I took less medicine so I had a higher baseline level of pain. I still only made half my former salary, but I was a highly paid professional and if my 2011 salary had been sustainable, I would have been able to adjust to that income level. It didn’t stay that high, but it seriously damaged my credibility with the Social Security Administration (SSA) later when I didn’t drop below SGA for several years after my injury. When it dropped, it wasn’t a matter of not being able to do the same work from home, it was a matter of finding anyone willing to pay me for it. Companies in my line of work do not commonly hire contractors based in their homes. Field work is usually a component of the job. The only way I’m going to find work I can do in my field is with people I already know, who are willing to work within my constraints because of our existing relationship. Once a job ends, it doesn’t necessarily mean that more of the same type of work is available.
My first SSA case worker, who I only met on the phone, sounded like Stanley from The Office. I could almost see his pencil poised over his crossword puzzle, annoyed by my interruption, his eyes rolled upward in an expression of “Lord, my burden is heavy.” I called “Stanley” because I had received 14 pages of forms to fill out in pen. After I had explained that my primary disability was partial paralysis in my dominant hand. I asked “Stanley” to send me electronic versions of the form that I could fill out on a keyboard, as holding a pen was too much. He said, agonizingly slowly, that there wasn’t that much actual writing to do, couldn’t I try it? I asked, “Aren’t you an agency that serves disabled people? How do you not have alternate formats?” He offered to ask me the questions over the phone and write my answers for me. The thought of sitting through his slow interview made me want to jump out of my skin. I ended the call abruptly and got online, where I downloaded the electronic forms from the SSA web site, and included a cover letter stating what I had done, and I had not in fact been able to fill out the forms they sent.
After my first rejection for disability, I talked with a retired case representative. He asked the right questions, but he assumed I understood the program, and I assumed he knew I didn’t, so I still didn’t really get the nuts and bolts of it. When I told a friend I was giving up on the claim, she urged me to talk with her attorney first. He was the first one to explain it to me in a way I understood. I saw why I had been turned down and why it was going to be a hard sell. I figured if I put that time and energy into finding things I can do, I would be happier, as I always am when I can get the government out of my business and live on my own terms.
In order to write this post, I had to do some research on the SSA website. There it was, all the information I’d seen in the attorney’s office. Why hadn’t I seen it in my research before? I realized that I had, but it is presented in such a way that if you don’t have the basic framework explained, it makes no sense. I think this may be by design, because if you understood the income thresholds and all, it would be easier to manipulate your plan and make decisions about how much work you’re going to do with that in mind.
If you do qualify for disability, you receive an amount determined by your work and salary history, and it’s a fraction of what you made before. Mine is around $1,400 per month, and my last full-time job paid $3,600 after taxes. You are allowed to make some money on your own, up to that year’s SGA amount, so I could make any amount less than $1,180 per month in 2018 without putting my disability in jeopardy. That makes a monthly total of $2,580, which is still considered low income in my county. I could get by on that with a very ascetic lifestyle, but nothing that would be worth “gaming” the system.
As always, I end up in the borderland—too abled to get disability, too disabled to enjoy my former standard of living. The disability program is not designed to restore your former income; it is designed to be a poverty wage. I choose to live by my wits, as I like to think I’m more resourceful than most. I imagine a lot of you have made your own journey with Social Security Disability Income. Share if you like.