Jay Lake: Writer

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[Cancer, Personal]

[cancer|personal] The frustrations of not working

I’m on Short Term Disability now. I’ve been approved for SSDI, and my Long Term Disability (LTD) claim is being processed. I don’t work at the Day Jobbe any more, and I don’t expect to ever be employed again.

I have terminal cancer. That’s my most basic disability: I’m dying. Beyond that, I can barely drive for a commute. My fatigue levels are high, my concentration is poor, my cognitive abilities are eroding (though I’m still pretty high functioning, mostly because of my very strong starting point), I spend hours in the bathroom most days, I can’t stand for very long and have trouble walking. A lot of this is connected to why I don’t write fiction any more, either. Bits of my mind and brain are shut off. Probably permanently.

So, yeah.

There’s another angle here. The disability rules for both SSDI and my LTD carrier are very strict about my not working. The Social Security Administration uses the phrase “Substantial Gainful Activity” (SGA) to describe this, but it extends to even fairly minor things. This is all in the name of fraud prevention, but it leads to significant frustrations for me.

For example, Cover Oregon, my state’s ACA implementation process, is convening an advisory council for healthcare delivery quality metrics. They are looking for patient representatives to sit on the council. Given my experiences with healthcare, and my rather long and detailed history of looking at my healthcare experiences from my perspective as a longtime business and technical analyst, I think I could make a strong contribution on the council, at least so long as I’m functional.

I can’t apply for membership, because both the SSA and my LTD carrier might view that as evidence I’m capable of working. Two meetings a month down in Salem, plus some reading and reporting, I could probably handle. It’s not full time work or anything close to it. There’s no compensation. But it would be evidence of SGA, and would imperil my disability benefits. And while I suspect that if I were challenged over it I might eventually prevail, I do not have the time, resources or interest to be a test case. So I cannot pursue this, even though I could do a lot of public good.

Another example. I should no longer be signing literary contracts. I’m not writing any more, but I continue to have opportunities to place inventory, reprints and even collections of my published work. However, it’s very unclear if negotiating and signing a contract, and receiving income from that entirely based on work performed prior to my disability, counts as SGA or off-setting income. Common sense says not, but the SSA rules are flatly contradictory on this between two different sections. And frankly, I don’t know what my LTD carrier rules say about this. Again, I’d probably prevail on being challenged, but again, I don’t want to be a test case.

I can handle the contracts issue through my agent. I don’t write any more anyway. The State of Oregon will be able to deliver healthcare just fine without my contribution. Some aspects of my economic life will probably wind up being shifted into a trust soon.

But what I hate, hate, hate, is being constrained from making what contributions I still can, for fear of running afoul of the fraud management rules behind SSDI and LTD. Because of the overwhelming institutional fear of granting unearned benefits, I am denied a last, few constructive roles in life.

This doesn’t seem right.

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