uncle sam? is that you?

Context matters:

I live in the US.
I receive Supplemental Security Income, or SSI, because I am disabled.
I do not receive Social Security Disability Insurance, or SSDI. I will explain why that is.
The Social Security Administration administers both SSI and SSDI, determining eligibility and overseeing the continuing disbursement of benefits.

please sirs and mesdames may I have another:

Less than a month ago I received a letter from the Social Security Administration saying that I needed to come in and apply for SSDI to make sure I was not eligible for it, because if I were, that would affect my SSI payments. They had scheduled me an appointment. The day I got the letter, the appointment was a week away. It did not contain any other clues as to why SSDI had become an issue in my case.

I did not go to the appointment. I wish this had been a casual oversight; it would have been much less painful that way.

Depression and PTSD can–and usually do at the slightest opportunity–make it extremely difficult for me to keep any sort of engagement on anything like Earth time. It took me six months and three consecutive appointments to finally be able to appear for a CT scan this past spring and summer. Part of the holdup–but by no means all of it–was that it took me several weeks to be able to begin to take a shower. Once started, the shower itself occupied the better part of three days. Well, as far as I was concerned showering was in fact the worst part of those three days. Figures of speech do not always line up exactly the way you want do they.

I should mention that the CT scan was ordered in part to rule out cancer. So you see what it looks like when I am highly interested in getting something done while that something happens also to set off a variety of emotional/physiological disturbances despite my best efforts to remain undisturbed–or sufficiently undisturbed that I can see to the doing of the something. Thus, seeing to it will take a very. very. very. long time. And that is with lots of help, lots of rescheduling, lots of no it’s okay let us know if anything would make it easier. Absent the help and yes this extremely slow response time might be what kills me. Chronic problems are chronic.

So that is an example. To keep an engagement with an entity holding a great deal of power over me entails a great deal of anxiety management, behavior management, cognitive management, and autonomic nervous system management–short of heavy sedation, this last is hit-or-miss at best. These all require very careful planning to prevent, where possible, and manage, where not, unrelated stressors that inevitably pile themselves on in obeisance to the sheer randomness of the universe.

The chances of me being able to keep such an engagement when issued one week in advance without the slightest warning or indication are, practically speaking, just about zero. This is something I have learned I cannot beat out of myself, shame out of myself, berate out of myself, or even softly cajole out of myself. The only way to work around it at all is to proceed slowly, attentively, and without coercion, whether internal or external. You could say I have a hair trigger for coercion. The slightest hint of it and I just, sort of, stop.

In that week’s time leading up to the appointment I was able to: consider emailing my former advocates for advice; notice on their website that they strongly suggest calling instead of emailing if time is short or the need urgent; decide instead to call them; spend a few days trying to move myself to pick up the phone and make the call, without success; ask myself whether I might just email them anyway; reach no conclusion on the email question other than that maybe I was not supposed to do that so I should try one more day to call; figure out for myself why I was finding it so difficult to call them when I had done it before without having to overcome quite this much resistance; realize that I needed to change tactics; and then to–ok, by this time the appointment was three days in the past. I did not make it to the step of finding someone to call Social Security for me to request a later appointment. This would have occurred just after I considered whether or not I could do that without help. I did not get to that step either.

I should probably add that during this time I was also confronted with some bare hint of return of the mental phenomena that Zyprexa had been medicating me against (nominally or presumably or in effect–no idea which) up until just about a year ago, when I had to be taken off the drug after developing tardive dyskinesia. That whole episode is not over yet, but the week with the whirly thoughts turned out ok only it required nearly all of my concentration and energy to ascertain how best to respond to the whirly thoughts and it left me a little jumpy about how the whirly thoughts might respond to my response as time goes on. I did not spend all that much time trying to call for help with the Social Security appointment because there was not all that much time left over. I was also sleeping ten to eleven hours a night but still waking up exhausted.

The next week and a bit more consisted mostly of what now and how fast or how slow should I go and what do you suppose will happen next and I wonder what I need to do about that appointment. While I was looking into all these questions, another letter arrived from Social Security.

Paraphrase:

Your SSI benefits are being suspended beginning next month because you did not do as the law required, which was to apply for all other benefits for which you might be eligible. You have ten days to file an appeal to keep from interrupting your payments. You can have someone represent you but you should probably get in touch with them very soon because we are not fucking around.

love, your friends at the SSA

ok.

uhm,
ok.

well.

[insert here several days of immobile freakout ending with one very short very intense very impromptu surprise extra therapy half-fifty-minutes. no spinning headlines but maybe some black and white noir-psychedelic effects to stand for confusion and distress and then thick cloud cover but for a tiny pinprick of sunlight]

1. I actually did apply for SSDI in 2010. I was determined not eligible because in my entire working life I have not paid enough into the system to be able to get anything back out of it. Have they forgotten? Did something change? I have done no paid work in the last three years and thus have not paid any more taxes of any sort. I will take SSDI if they want to offer, but why is this being held over my head all of a sudden as though I have been neglecting some essential duty for some very long time?

2. I have PTSD from childhood emotional, spiritual, and sexual abuse/rape. There simply is no way for me to approach an authoritative entity without fairly involved preparation. Without preparation I am looking at extremely painful and possibly dangerous physiological cascades that among other things dump so much cortisol into my bloodstream so quickly that I can feel it overflowing its well-marked trenches–the ones it has eroded out of my nervous system over the last fifty years and which we are working constantly to fill back in so that my neurons can more easily reconnect in less alarming ways. Sometimes these reactions occur despite our best efforts to stem them, but usually they can be mitigated in some way if we have some time and space to work with them.

Given this–that is, given the nature of my disability–why and how is it ok for the Social Security Administration to send me these kinds of communications? This whole sequence could not be any more restimulating of trauma-produced neurological pathways if it had been planned expressly for the purpose.

And this was their opening move.

3. I don’t even know. I seem to live in some insane unintuitive upsidedown opposite land. Or I got moved here at some point. Which is it and where is the reasonable universe.

 
 

not an epilogue because time is weird

Today is Sunday. Two days ago I walked downtown to the office of the organization that helped me apply for SS(D)I the first time around. It looks like they will help me now but I still have to figure out how best to light a fire under someone in a very short time when the most I personally can do is say help. um. help? help. With just about that much volume.

Somewhere not too long ago I read something about how the fight/flight/freeze response can become “stuck” in PTSD and that many abused as children learned to freeze and so this is where they get stuck as adults and if this is so then it explains a number of things about weeks like the one that just passed.

I have people. I said to one of them yesterday: I guess I am lucky. And it is true. I am. On my own, I would already be on the street.

post-post-epi-script-logue

To be clear, I am complaining here about how the Social Security Administration is making my life unnecessarily stressful by thoughtlessly taking advantage of my disability to try to shake me off their rolls. But I want also to emphasize that I am lucky because I have help. I will be ok, one way or the other.

See, I do not know if this is a procedure that ticks off every few years for anyone on SSI, where the computer says oh it is time to harass this person for a little while to see if they can be got rid of, and so happens regularly, or if this is a one-time push to see how many people they can cut costs on at one time. But either way it seems abundantly clear to me that it is a deliberate effort to cull people out of SSI benefits, whether they are taking us one at a time or targeting several in one go.

I will leave to the side the complex and worthwhile problem of whether this sort of bureaucratic action is being taken actually to trim payments to people who might no longer need them. It does not look that way to me; they want to see if another agency can fund my benefits. Paper money shuffling. The point, though, is that this sort of maneuvering will undoubtedly cause people like me to lose their benefits quite aside from any question of whether any of us are in need of them: and it will do so by exploiting the fact of our disabilities. They are betting that I will not be up to the challenge of taking them on. They would stand a very good chance of winning that bet very quickly if I did not have access to external resources. Many disabled people do not.

And so this letter is not something that just happens to upset me. It is a manifestation of a systemic failure to address disability in terms that are appropriate for addressing disability without causing further harm.

I do not mean to make claims about some grand conspiracy to bully disabled people out of their benefits (even though my definition of “conspiracy” is shifting these days to include those that are enacted without any well-organized and deliberate agency to guide them). But there certainly is a widespread mythology about disability benefits being abused and individuals getting rich off their Social Security checks. In response to this mythology we certainly can see an array of forces trying to make it harder and harder to obtain disability benefits. And further arguments over who should and should not get how much money for what.

What there is not, that I am aware of, is any conversation in the US that looks at how the Social Security Administration itself treats disabled people, and whether it treats us equitably in its administration of SSI and SSDI.

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4 thoughts on “uncle sam? is that you?

  1. It’s a shame case workers can’t/ don’t understand the nature of people’s disabilities. I guess the sheer numbers would make it hard for them to take things into consideration. I know what you mean, though. I don’t do well when things are sprung on me, either. TBI.
    I hope it works out for you quickly.

    • Thanks, Lydia. I am taking it one day at a time and complaining far and wide. :)

      As I added above this afternoon, I think that the problem is bigger than any single caseworker or even any overall caseload. I was going to explain in my reply here, but realized quickly that it was actually something that needed to be in the post itself.

      That and I have no idea if I even have a caseworker anywhere in this particular chain of bureaucratic relationships. I have never met them, if so. The SSA presents itself to me as impersonally and monolithically as it would to anyone walking through their downtown office doors for the first time. Are caseworkers still a thing?

  2. I’m sorry, Erik. It sounds like an absolute nightmare. Hopefully it will get straightened out so that you keep your SSI.

    I’m going through a different battle at the moment (and maybe for several months if I can find someone to litigate for me) which has been partly caused by my own seeming inability to speak up and advocate for myself… and I’m scared to death. It is taking all I have to pick up the phone and make calls.

    • I can barely make phone calls myself and in fact am sitting here figuring out ways to use email in one case and take advantage of a voicemail system in another just so I do not have to talk to a live person today.

      I hear you. I wish it did not have to be this way–or I wish that our culture could come to understand that so many of its systems set up for going about everyday life are in fact agonizing for a significant number of people to negotiate. And then, you know, put more compassionate ones together.

      One thing that is helping me is fastidious self-compassion. Ferocious even. It would take several posts to explain how I have been able mostly to stop beating myself up over things that are either beyond my control or so entrenched in my neurology that changing them is taking and will take years. Maybe I will write about that soon.

      I hope you can find the help you need. Best of luck to both of us!

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