Misrepresentation, Diversion and Truth: Talking about SSDI

One of the hardest things about existing in a community is that eventually you will have to meet new people.  The elephant will enter the room.  “What do you do?” “No, what do you do for work?”  I am on SSDI, Social Security Disability Income.  That means I don’t work in the technical sense.  I sit around in my underwear drinking iced coffee and working on my novel while the government sees fit to direct deposit funds every month.  I go to the grocery store and use food stamps to buy spinach and chicken.

Its not all air-conditioned languishing and free marshmallows, however, there’s the regular bouts of psychosis.  This morning I spent two hours convinced my stalker had entered the apartment and was about to rape me, while I lay there unable to move, chanting selections of the Lords Prayer in a garbled monotone.  Being schizoaffective and dependent on five medications twice a day that render me useless for the following hour, not to mention the memory loss and brain damage, I’m willing to accept the Social Security Administration’s assessment that I am permanently unfit to work.

This has been a mixed blessing.  While on one hand I have what I have always wanted as a creative person – endless free time to write, paint, read, go swimming, drink wine in the middle of the day – I am also legitimately much sicker than I have ever been.  The cerebral degeneration is real, I cannot understand texts and theories that I understood at earlier periods in my life. Directly after taking the Ativan I am about at an 5th grade level and enjoy fart jokes. My world has shrunk to my apartment and many times I am afraid to leave.

The times that I do, there are the questions. My close friends understand my issues and many are marginally employed themselves.  In a sad sort of way, this recession has reduced my marginalization in that fewer and fewer people have traditional 9-5 jobs.  I hate to think that way, though, as I am getting paid to sit around and hallucinate, and they are not.

So when I do venture out in unfamiliar social settings, I have several strategies for dealing with these questions, depending on whom I am talking to:

If I am talking to someone who is unfamiliar with workings of the literary world (i.e. doesn’t know that writers don’t make any money), i.e. friends of my parents, older adults, people to whom it would be very awkward to reveal, I tell them I’m a writer and have two books published, and let them assume I’m collecting royalties. The first part is true, the royalties part sadly is not.

There are two ways this can go, they can politely accept the half-truth and move on, or they can reveal themselves to be my least favorite conversational partner, most often encountered at parties/bars, most often male, and gainfully employed and interested in humiliating me, the douchebag of multiple questions.  We’ll call them the DMQ.

The DMQ insists upon prying, “That must not pay the bills.” “Do you write for TV, then, that’s the only kind worth doing.” “No really, what do you do for a job?”  While my partner urges me to lie in these situations, for some reason (drunkenness, usually, or an urge to shock) I often fumble and fess up.  “I’m on Disability.”

Sometimes this closes off the conversation well and permanently.  The polite conversationalist will leave it at that.  I present as an able-bodied cis-gendered high femme, so the questions that run through the person’s mind I imagine are on the range of “Fibromyalgia?  Is she psycho?  What kind of psycho?  Sexy psycho or scary psycho?  Oh she’s married.  Well if she’s psycho?”

It is unfortunate that I lack the boundary level, especially when I am drinking, to shut these conversations off.  Part of my willingness to be open about my mental illness to random strangers in bars is an activist desire to raise visibility, to show them that not all schizophrenics are in straightjackets, some are in platform heels and ten minutes ago you were excited to meet them.  Invisibility is part of stigma.  I tell myself I am taking one for the team, amused at the expression of fear on the DMQ’s face when I mention schizoaffective disorder.  Truth is what you get when you ask too many questions.  The clown face at the bottom of the barrel grinning up at you, gruesomely.

The third type of situation is when someone I honestly want to get to know asks me what I do.  Then there is the dangerous chasm of the reveal. Will this person still want to talk to me if they know I’m on SSDI?  Do they have Republican views about social services that would brand me a welfare queen?  While this is rare in creative communities, you never know.  I have to hold my breath and dive, and tell.

Once the reveal is made, if we are still in conversation, there is the paradox of my ability and my disability that some people are not able to comprehend without accusing me of gaming the system.  The fact that my disability is psychological, invisible, I am not in a wheelchair, which to some people is the only kind of disability they see as legitimate.  The blog Diary of a Goldfish has a discussion of the Disability Hierarchy that I will link to here.  There is the fact that even though my disability is mental, I do things with my mind like write, publish, perform and curate, and these achievements would seem to negate something being so horribly wrong with me.  However, none of those things are paying gigs.

In the end, sometimes someone I have just met will tell me “I don’t think there’s anything wrong with you that a good waitressing job wouldn’t fix. I think you’re lazy and you’re pulling a scam and I hope you get reported for it.”

Because after all, they are a Doctor and they were with me in the psych ward all those times, and they are with me nightly as I hallucinate my stalker ejaculating on the front porch.  The people who don’t believe in mental illness are the best ones to talk to about this. Oh, the best!  It’s like not believing in wood.

The burden of both revealing my disability, proving I am worthy of receiving it, and justifying my paradox of ability and disability is quite a bit more than I want to get into with a casual acquaintance.  It places me on the defensive, stressed, placing counter-argument after counter-argument as I must prove I am not a criminal.

Perhaps I should just learn to lie.


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  1. By Katie Bongiorno


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