Not long after my midlife diagnosis of Autism Spectrum Disorder with anxiety and obsessive-compulsive features in late-2016, I attempted an application for disability. After a consultive exam through my state’s Disability Determination Services, I was denied for not being disabled.
At the time, I didn’t appeal this decision because the entire thing felt rushed and unfair, and there was a degree to which I’d jumped into the process because I’ve been a financial burden on my family for my entire life. It didn’t help that I’d unofficially been told by an agent that even were I to be deemed disabled, I had too few work credits to qualify and yet also too many work credits to qualify under a parent’s work history as a Disabled Adult child.
Instead, I rushed headlong into yet another attempt to be responsible and responsive: a Vocational Rehabilitation job placement that within just two months sent me into a spiral of autistic burnout, complete with sobbing breakdowns both at work (I quietly had them in the bathroom) and at home, that eventually led me not just to quit that job but to quit volunteering at a local nonprofit, too.
I’ve arguably never recovered even the limited capacity I’d experienced in the decades before that job placement. My disability only has increased.
Late last month, I sat down to file a new disability application after two years of weekly psychotherapy that has helped me capitalize on the self-examination I’d already been doing through blogging after my diagnosis, bringing new clarity about my circumstances.
Within days of having completed only the first part of the application—literally just the identification portion—a message popped up in my Social Security account telling me that I’d been denied for “non-medical” reasons, and to await a mailed notice with the explanation. While waiting, I finished the application for the record, and prepared additional material to submit.
That notice came today, and immediately I filed the “request for reconsideration”. In a rare bout of usefulness, this process included a means of providing additional material by uploading it directly. Everything I’d prepared to mail in as part of the application went electronically as part of the reconsideration request.
(The “non-medical” reason, for what it’s worth, was that they’d previously already determined I wasn’t disabled, and also I hadn’t provided any information showing health changes prior to December 2005. You should remember, though, that at the time of their “non-medical” denial I still was filling out the application and they’d only received the initial identifying section that submits immediately.)
Included was a twenty-page document I’d constructed last year, which I’d deemed a “disability narrative”. It exhaustively details my post-diagnosis life, as well as outlining why for all intents and purposes my entire pre-diagnosis work history is a series of Unsuccessful Work Attempts (to use a Social Security term of art from other contexts) that ended prematurely due to disability, even if undiagnosed at the time.
So now, once again, I wait. Inevitably, they again will deny me. At that point, the appeals process begins, and likely this is when I need to try to get a lawyer involved. Given my history, it’s unlikely that I will find one who wants to gamble on me.
Emi Nietfeld for The Atlantic examines the bootstrap myth in part through her own experience and in part through Alissa Quart’s new book, Bootstrapping: Liberating Ourselves From the American Dream.
[…] In a wide-ranging 230 pages, Quart challenges our nation’s obsession with self-reliance. According to Quart, the fiction that anyone who works hard can have a better life increases inequality and promotes policies that hurt us. Meanwhile, blaming people for their supposedly bad choices is “a kind of nationwide bullying” that the poor internalize. Bootstrapped puts words to beliefs that I struggled to articulate as a teen and that haunted me into adulthood: Both success and failure were up to me alone, I was valuable only when I triumphed, and if I couldn’t overcome, I’d be better off dead.
Nietfeld outs one of the hidden tolls of the bootstrap myth: “I’d bought into the intoxicating fiction that I was the master of my fate. When it turned out I wasn’t, the failure felt personal.” More or less, this also is the experience of someone like me who spent four decades trying to be responsive to normative requirements but failing due to an undiagnosed disability. I wasn’t just a failure. I was a fuck-up.
There’s another way in which bootstrapping is a myth: those who most viciously promote it for others deem themselves to be exempt in their entirety.
Nathan J. Robinson for Current Affairs takes a look at the obvious and inevitable hypocrisy surrounding the failure of Silicon Valley Bank.
Silicon Valley Bank was widely used, as you might expect, by tech industry startups (as well as a bunch of California winegrowers), and startup types are not generally known for their belief in generous government handouts to those screwed by the free market. But libertarians quickly become socialists when they’re the ones who end up on the losing end of one of capitalism’s frequent crises. Billionaire Mark Cuban swiftly went from denouncing regulators to asking “Where were the regulators?” Tech industry leaders immediately started calling for the FDIC to ditch its $250,000 cap on guaranteed deposits and guarantee everything including the nearly $500 million that Roku held at SVB. Venture capitalist David Sacks said it was unfair for depositors to be punished for opening a bank account at an institution that failed, and that he wasn’t asking for a bailout but merely for the government to “ensure the integrity of the system.” CNBC reported on those noting “the irony as some VCs with notoriously libertarian free-market attitudes are now calling for a bailout.” (At Slate, Edward Ongweso Jr. has more on the “tantrum” thrown by venture capitalists who demanded that the government step in when SVB went under.)
“Poverty is just as outrageous as a business losing access to its bank deposits,” writes Robinson, “and there should be a similar level of urgency and outrage when people who are not Silicon Valley Bank depositors undergo economic hardship.”
A corollary to the bootstrap myth is the idea that money doesn’t make you happy anyway. Matt Killingsworth in Nautilus answers this question based upon some recent research.
On average, happiness just keeps rising with income. In our new study, we have pretty good data up to around $500,000 a year. And happiness is rising incredibly systematically. So systematically, I strongly suspect it’s going to keep rising for a while.
The vast majority of the positive relationship between higher incomes and greater happiness is explainable in terms of people having more control over their lives. That’s like 75 percent of it. Most of it is the sense of being able to live the life you want to live. Part of it might also be the freedom to do the things that you find meaningful. Higher earners report having more meaningful lives. If there’s any limit to money’s effect on happiness, it might be the point at which you can essentially do anything you want.
Emphasis added, in part because the bootstrap myth tries to make you believe that you have control over your own fate, untethered to any wider societal dynamics. Surprise: more money means more control (and less fear!), and that means more happiness.
One of the ways I’ve discovered to discuss my own circumstances is that I’m roughly able to maintain a foundation of independent living and the everyday things this entails such as budgeting, meals, errands, hygiene. What the Vocational Rehabilitation job placement disaster showed is that if we try to built atop that foundation, not only does that new structure collapse but also it damages the foundation.
Recently I had a dream in which I’d had to pack up my entire life and leave. (None of the dream involved any real locations, but this was the scenario.) Moving across the country to live with a relative and some stranger of whom I’d never even heard, almost as soon as I’d arrived I was surprised by tornado sirens. An approaching hurricane already had begun flooding the streets outside.
(I remember wondering if I was in Florida because despite the sirens, the coming hurricane, the flooding, there were people recklessly joyriding in airboats.)
I’d started to tell my therapist that I wasn’t sure why I’d had this dream or what it meant, except then I suddenly knew, and it was obvious. My greatest fear is that absent a financial windfall, or even the much lesser support of disability, I will end up facing the choice of moving 3,000 miles away from the city that’s been my home for nearly three decades, in order to go live in a relative’s spare room, in an area with no accessible public transportation, where I’d have no control over my own life or movements.
Psychologically, this is the equivalent of a disaster requiring the warning howl of sirens. Just thinking about it makes me feel claustrophobic.
I’ve written about this before, nearly two years ago in the midst of a bunch of medical stuff and an open question about my living situation due to the property changing hands.
I kept thinking about being made to stop living independently. I tried to project myself forward into what that life would look like, for me.
It felt like every single anxiety—actually, fear—response at my nervous system’s disposal flared up at once. It a bit felt like dying. It a bit felt like maybe dying would be better. In the rare moments my brain glances off that idea (and, to be clear, I’ve never before had my nervous system light up at just stray thoughts, or “passive suicidal ideation”) there’s a clear strain of my inner monologue that plainly states that I’d never actually hurt myself.
Thinking about losing my independence, though, my inner monologue didn’t say that this time.
You know what would make me happier? Money—and I’m not a failure or a fuck-up just because I don’t have the capacity to earn it for myself.
Renard: Well, whichever way you look at it, it’s still cannibalism.
Wu: Uh, I think it’s pronounced, “capitalism”.
—Grimm, “Organ Grinder”