It’s been two years since I applied for Social Security Disability Income (SSDI). I have so many feelings about it.
Invalidation is a huge trigger for me. (More about this in a later post) Having people not believe that I'm hurting has ended friendships, started fights, and left me wounded in ways I'm at a loss to heal. It's even worse when my life hangs in the balance and I'm up against a faceless bureaucracy.
I’ve heard a lot of stories about applying for disability. That it can take years. That it's this way to dissuade everyone who doesn't absolutely need it.
The process of getting a lawyer was humiliating and triggering. Many wouldn’t take my case because they didn’t think they could win it. (Very invalidating.) One problem was my unsuccessful work attempts -- they're actually accounted for in the process, though, and are known as UWAs. To me they were painful, traumatizing, physically and psychologically damaging experiences that proved to me that while I can sometimes get a job, it starts destroying me once I have it.
“There was only one catch and that was Catch-22, which specified that a concern for one's safety in the face of dangers that were real and immediate was the process of a rational mind. Orr was crazy and could be grounded. All he had to do was ask; and as soon as he did, he would no longer be crazy and would have to fly more missions. Orr would be crazy to fly more missions and sane if he didn't, but if he were sane he had to fly them. If he flew them he was crazy and didn't have to; but if he didn't want to he was sane and had to. Yossarian was moved very deeply by the absolute simplicity of this clause of Catch-22 and let out a respectful whistle.” —Joseph Heller, ‘Catch-22’
No matter what work I’ve done, even attempting self-employment, it has been so painful and difficult that it has damaged me and destroyed me to do it, put my life on the line, thrown me into so much stress I was out of my mind on trauma and flashbacks and totaled two cars, as well as coping with the increasing pain and stress through cocaine, cutting, and self-flagellation in morning showers, bathroom and lunch breaks, and alcohol after hours. Yup. Really. Eventually I was nearly insensate and mute. And eventually, here, I will write further on how with addiction as well as suicide we’re asking the wrong question—we ask why the behavior, when we should be asking ‘why the pain?’
“In the book, Catch-22 is a military rule typifying bureaucratic operation and reasoning. The rule is not stated in a general form, but the principal example in the book fits the definition above: If one is crazy, one does not have to fly missions; and one must be crazy to fly. But one has to apply to be excused, and applying demonstrates that one is not crazy. As a result, one must continue flying, either not applying to be excused, or applying and being refused.” —Wikipedia article on Joseph Heller’s ‘Catch-22’
It seems a classic Catch-22 that I have to have the skills and competence advocate for myself and put in a lot of (triggering) work just to apply for disability, fill out paperwork, get medical records, fill out more paperwork, find an advocate or lawyer, stay sane and articulate through this. To produce history when there is none, erased by lack of medical records from when I was in the clutches of the cult and the sale of the clinic and destruction of records, my own faulty memory, and no trustworthy witnesses or sources of information from my early life. On ‘Quantum Leap’ they refer to Sam Beckett’s memory as ‘swiss-cheesed’ through the process of Quantum Leaping, with huge inexplicable gaps. Having been brainwashed and mind-controlled for most of my life my memories are sometimes jumbled with things that never happened but were told to me, over and over.
Fortunately lawyers and advocates work for a percentage of back benefits if the case is won; otherwise most applicants would ever be able to afford a lawyer. And even more fortunately, when turning to the neo-oracle that is Google search with desperate questions about how to deal with the prolific psychological exacerbations of applying for disability while experiencing psychological disability extreme enough to warrant that application, I found an article written by a local disability advocate that spoke to my heart. And she agreed to take my case. She’s worked with many clients with psychological disabilities and can understand my plight.
This was, unfortunately, after an experience with a lawyer who agreed to take my case and then flaked out when his wife got cancer. I feel for him, truly I do; my husband died of cancer. But I knew I was useless to help anyone during the year he fought for his life, and I knew from experiences with this lawyer he could not help me win my case under the circumstances. Putting myself through the process of searching for another lawyer was fraught with its own triggers and crises, and I was on my own to deal with the fallout.
Another problem with my case is that I’ve never been hospitalized. And the reason for that is that when I’m in crisis the last thing I want is people around me, or feeling trapped, or having freedom taken away. I get paranoid, with good reason. The worst nightmares of my life have come when I was trapped in the house of a man with a medical degree and a woman with a degree in clinical psychology, or otherwise trapped with people who had power over what happened to my body and stood in judgment over my pain and what was best for me. I’m not exaggerating when I say I would rather die than go in a hospital for mental health reasons. It’s one of my worst nightmares. Particularly after hearing horror stories of the local mental hospital.
But the hearing date for my case is still beyond my control. The sword of Damocles is hanging over my head and there is nothing more I can do than what I have done, go to my doctors, get statements, get releases for records, entreat social workers and therapists and doctors who work with me to testify on my behalf, try with limited funds and resources to get additional appointments with specialists (don’t get me started—I’m still waiting on that…).
I’m waiting and waiting. I search online for guidance. I wondered if it was possible for me to write in statements about the weak areas in my case, explaining what it’s like for me when I work, about the thirty-plus flashbacks I have a day, difficulty focusing, memory problems, hypervigilance leading to paranoia and loss of sleep and basic self-care, and why I won’t go in the hospital and staunchly resisted attempts to send me there during crises. I found discussions of people who, disgruntled at the unreasonable situation of waiting two years to get disability during which they couldn’t work and had no income, wrote to political representatives and that in some cases it accelerated their cases.
It’s triggering to tell my story, and to think of telling my story to strangers who have no reason to care. The chance of invalidation is great. As is the powerlessness that comes from pleading for help for my life and hearing ‘I’m sorry, but no, there’s nothing we can do’ — or worse, ‘we believe that you can do some sort of work.’ I thought bit by bit I would break it down into steps, find sample letters, figure out how to use my strength — my words ± to reach out. I hate having to reveal this most wounded and vulnerable part of me to uncaring strangers just to try to survive. It feels like having to take my clothes off and let people touch me all over, with disdain or blankness in their eyes.
I feel something similar having to over and over again fill out paperwork and submit my personal financial records to renew eligibility for a low-cost clinic and food stamps. It’s so triggering to know that my basic needs could be denied for some reason out of my control, to face these people with so much power over me and no reason to care, under pressure themselves, and know that changes in state funding and policies I have no say in could yank these basic needs from me at any time. It disenfranchises me as a voter, not to mention the fact that this and my disability take up so much of my caring bandwidth I have very little to spare beyond my own struggles.
“Other forms of Catch-22 are invoked throughout the novel to justify various bureaucratic actions. At one point, victims of harassment by military police quote the MPs’ explanation of one of Catch-22's provisions: ‘Catch-22 states that agents enforcing Catch-22 need not prove that Catch-22 actually contains whatever provision the accused violator is accused of violating.’ Another character explains: ‘Catch-22 says they have a right to do anything we can’t stop them from doing.’
Yossarian comes to realize that Catch-22 does not actually exist, but because the powers that be claim it does, and the world believes it does, it nevertheless has potent effects. Indeed, because it does not exist, there is no way it can be repealed, undone, overthrown, or denounced.” —Wikipedia article on Joseph Heller’s ‘Catch-22’
Disability and Self-Worth
“What does ‘worth’ mean, Mister Nutt?”
“It means you leave the world better than you found it,” said Nutt.
“Good point,” said the lady with the macaroons. “There’s far too many people around the place who wouldn’t dream of doing a hand’s turn.”
“All right, but what about people who’re blind, for example?”[…]
“I don’t think there are absolutes,” said Nutt. “I think what Ladyship meant was that you have to do the best you can with what you have.” —Terry Pratchett, ‘Unseen Academicals’
What is worth?
Is it intrinsic? Gold has a lot of monetary value, but as a metal for making things out of, it’s pretty soft and useless unless used as an ally or plating, or in repairing beautiful wabi-sabi broken Japanese vases through Kintsugi. Which makes an amazing metaphor, but I digress.
What about smartphones? Many of us have come to depend on them, but a smartphone without connectivity or power, or in the hands of a third-world individual whose pressing needs run to clean water and food, what worth does it have?
We all have value judgments. Some inherited. Some unquestioned. Many subjective. As someone who’s written my whole life, not to mention my experiences in a cult, I have run up against the persistent idea that worth and value are determined by external forces based on sometimes arbitrary and externally enforced qualities and characteristics.
Our consumerist culture, our mass media, our advertising panders to those who have money. People without jobs are pitied, reviled, harassed. Their joblessness is often seen as a direct measure of their worth, and gaps in employment make it harder to get jobs. Just as someone without friends or romantic attachments is assumed to have something intrinsically wrong with them. People who live in their parents’ basements are the fish in a barrel it’s easy to shoot with jokes, mockery, to lump into one lip-curl sneer dismissal of an entire segment of people. Although I’m hearing many millennials are graduating college and moving back in with no job prospects available.
“He’s always making things. It’s as if… worth is something that drains away all the time so you have to keep topping it up.”
“Possibly, now you put it that way, she has been a little too brisk with him.” —Terry Pratchett, ‘Unseen Academicals’
What is worth? If a person writes a novel, and no one likes it but the author, does it have worth? If a person has no friends, no family, no job, does she have worth?
There’s a stigma around disability. A lot of everyday ableism. People think disability = wheelchair. It’s the universal symbol for disability, though there are efforts to change this. I’m glad there are places like the Invisible Disabilities Association and Invisible Illness Awareness Week as well as articles on NPR and Everyday Feminism raising awareness since most (estimates show either 73% or 74%) disabilities do not require assistive external equipment like wheelchairs, walkers, or canes.
So many stories and TED Talks on disability we see are ‘inspiration porn,’ people with visible disabilities who worked so hard to overcome them and be as productive as normal people, and insist that we can overcome everything. I’ve always felt that was unfair to those of us who can’t. (Please read this short excellent post from Real Social Skills about the importance of the phrase ‘I can’t.’) I already feel enough of a failure by my society’s consumerist values I’m hit in the face with every day, and the lack of options and the humiliations I face as someone poor and disabled, without being held up to an unreasonable standard by people who have no idea how hard it is for me.
Having to declare over and over again how disabled I am puts so much of my focus on what I can’t do. That’s depressing and demoralizing in itself. I want to take pride in myself as a disabled person — not in my disability, because I wish I wasn’t disabled, but in my whole self including my disability, which is just one part of me. Yet often when I speak about my disabilities and happen to offer specifics about what they are, I encounter people who expect me to be working 24/7 to ‘cure’ myself, and tell me all these things I should do to ‘fix’ me when I didn’t ask and are not my doctor and haven’t had my experiences and have known about my case for all of maybe thirty seconds (note: unsolicited advice is criticism, and a habit that can be detrimental to all your relationships). That doesn’t convey to me that they’re willing to accept me as I am. I know they mean well, they’re only trying to help, and they’re products of an ignorant pill-popping society where the disabled people who get the most airtime are those who overcame, the uplifting story at the end of the nightly news to encourage abled people. Intention is not the issue. The issue is I want to be heard and accepted as I am.
I resent being someone’s ‘fixer-upper’ friend. I also don’t like being someone’s ‘inspiration’ when it reduces me to a thing for their benefit, or when they tell me how strong I am but don’t have the strength and humility to just listen to the uncomfortable tales of how humiliating and hard it is for me right now, that there’s nothing I can do, no pill, no quick fix, no job I can do, nothing. I know it’s scary to hear that someone as ‘strong’ and ‘articulate’ and ‘smart’ as me can still be in such dire straits. If it could happen to me, maybe it could happen to the listener too, and that’s a terrifying prospect. I get it. But honestly I need a place to talk about how hard this is. Because silence induces shame, and the fear responses of other people induce shame and isolation. It puts all the focus on the disability until I feel I’m nothing but a huge pile of ‘can’t.’
What I want, what I really want from people I interact with, is for my boundaries and my disability to be accepted without a big deal, like my eye color. I want to be able to say ‘no,’ or ‘I can’t,’ and have people not take it as a personal insult, or fall apart crying, or panic, or express how bad they feel, or make it about their feelings and needs, or want to know why, but just be like, “Okay, sure. We’ll talk about/do something else.” I don't want to argue or fight when I say ‘no.’ I don’t want to negotiate. And I don’t want to have to say ‘no’ more than once, that raises my Defcon level and I feel a need to retreat into my armored mountain and cut off from everyone.
When people learn I’m disabled, I don’t want to have to prove it, or share my symptoms or my history. I don’t want to hear about these bullshit ‘miracle cures.’ I don’t want to hear about their stories or their friends with disabilities. I don’t want to hear that other people have it worse, or how I should feel or think about my disabilities. I don’t want pity, I don’t want to be looked down on, and I don’t want people to do anything to ‘help’ without checking with me first. I don’t want people to say things to try to comfort me that might be invalidating, like ‘everything happens for a reason’ or ‘at least you LOOK good’ or ‘you’re still young, maybe you’ll get better.’ All I want is validation, and I want to know it’s safe to talk about how this part of me makes it hard to exist in this society and this world, and validation for that.
I want to be heard. I want to be valued as I am right now. Not for what other people want from me, not for what I can struggle to do on my best days, but for what I can do and be even on my worst days, which these days are so numerous.
…Doesn’t everyone want that?
“Do I have worth?” asked Nutt.
“Yes, Nutt, you do.”
“Thank you,” said Nutt, “but I am learning that worth is something that must me continuously accumulated. You asked me to be becoming. Have I become?”
“Yes, Nutt, you have become.” —Terry Pratchett, ‘Unseen Academicals’
He didn’t mind how he looked to other people, because the nursery magic had made him Real, and when you are Real shabbiness doesn’t matter. ― Margery Williams, ‘
I’m staring at a mailing I got recently from the Social Security Administration Office of Disability Adjudication and Review. The case manager working at my advocate’s office tells me this is a sign they may be about to set a hearing date.
I had just been nerving myself up to do the work to find out who the hell my representatives are and what to write them. I had been waiting to see a rheumatologist for eight months to get a corroborating statement on my physical disability. I had been wondering if I could write statements to address the weak spots of my case, or clarify how difficult it is for me to function, and how intolerable it is for me to be physically around other people or have them have financial power or control over me in general. Now I’m staring at all this.
I’m all I’ve got. I have to take care of myself and get myself to appointments and fill out forms and write letters myself. And I would dearly love to just mail off all my journals over the last five years, full of pain and confusion and paranoia, to the Office of Disability Adjudication and Review and say, “HERE! You demanded I strip down and show you where it hurts and why I can’t work, so why not look at how it feels to be inside my head? This is what you deny. This is the madness that plagues me. It doesn’t fit in your little boxes on your little forms, and neither do I. This is why I’m unfit for duty in the workforce of society. I can barely keep up with what’s here and now in this moment or remember or know what is real.” Part of me would love to just show them one of my emotional meltdowns.
But much greater than that is the fear of consequences. That my liberties will be taken away, that I’ll be involuntarily committed and lose my mind entirely, thrashing madly like a wild animal thrown in a cage, ensuring in my panic and terror that I will never leave, that I’ll be drugged and shocked into insensibility until I’m a drooling zombie. And I’ve known people who have had this happen to them. Yippee. It’s not like my fears are unfounded or cognitive distortions. I’ve had enough nightmare experiences to know there is real danger attendant on my choices.
I’m supposed to be together enough to do this, this triggering labor, these conversations and evidence-presenting that take my breath and words away. So many times when I have told these things, I have been invalidated, insulted, denied my basic needs, denied my very reality, been told my pain isn’t real, doesn’t matter. It was my parents’ and the other cult members’ favorite refrain. That if I can’t work it’s my own fault. That I’m lying. That I haven’t really tried hard enough or long enough or enough enough. That there’s something I haven’t done. That I could overcome, that I really can work.
And I can't. I know what that makes me in the values system of this society and culture. If I can’t work enough to meet my needs for survival, then I don’t deserve to survive anyway, yes? Why should people’s taxes and government support parasites like me? What worth has my life if I’m not contributing anything, no labor, no support, nothing of worth or value to other people with most of my waking breaths? I spent most of my life trying to please others and with the notable exception of my husband and dog, both now dead, nothing I did was ever enough.
It’s demoralizing. And the fact that I keep trying to make in-person friends and getting used and hurt and not being able to make it work tends to reinforce my sense of hopelessness, helplessness, worthlessness.
I know by now that there are people who don’t want to hear and don’t want to believe, and I have wasted too much of my life and voice on trying to convince and speak to them, because there is nothing, nothing at all that will ever convince them. I have lost all confidence in my voice and my words because they were never enough for these people.
I’ll be honest. I’m filled with panic. I’ve spent most of the day bounced around through flashbacks of all that’s come before and worst-case scenarios. Since I’ve seen the worst of humanity rationalized as ‘for my own good’ I can tell you that things you wouldn’t even think possible are. I’ve paced, I’ve dissociated, I’ve had enormous physical and psychological pain that had me thrashing and sobbing, unable to really define where one ended and the other began. I’ve been triggered out of my mind. My memories of today are in jagged shards and missing gaps, as happens on my most stressful days. This isn’t a panic attack that’s gone in a few minutes. This is a crisis that will drag me down with its undertow throughout whatever comes next.
And thanks to North Carolina’s mental health funding, the Community Support Team I had to help me deal with practical real-life support like this was only available for six months. And then six months later I got it again, and then it ran out at the beginning of February and I won’t be eligible again until August.
I am terrified that when it comes time for the hearing to decide my fate, all I will face is a room full of people just like those who would never believe the pain they could not see, weren’t enduring and living with. Dead fish eyes, cold contemptuous flatline mouths, bad-cop rapid-fire questions, sending me right back into childhood nightmares that played out just like this.
I’m afraid of trying so hard to hold it together that they believe that this is a sign I could work. I’m afraid of genuinely melting down and having them decide it’s an elaborate act, or believing it and calling an ambulance and involuntarily committing me to my worst nightmare.
I am terrified that I will leave that room either in a straightjacket or in the silent resignation of the condemned.
“Someone might offer you pity and sympathy for your disability. Make them state the disability. Make them say what they mean. Make them support it with evidence. If they say that you’re delusional or mentally deficient or too grief stricken to know what you’re saying—which, I believe, you definitely would be if your memory were intact—make them explain how they’ve come to that conclusion. Then, by your questions and your behavior, prove them wrong. If, on the other hand, they can’t say what it is they’re pitying you for, they must be the ones who are confused. You see?” —Octavia Butler, ‘Fledgling’