Content Note: trauma, neglect, disability, Social Security Administration, mental health
On October 28, I sent a draft essay to PublicSource to inquire about their interest in the topic. The final version was published on February 10, 2020. That’s over 100 days.
I share this because I want to emphasize how much energy and time goes into creating content about disability when you are disabled, or at least for me. My perspective informed the narrative, but it took 100 days to get the damn thing finished. And that’s on me, not PublicSource. They assigned an editor, a fact checker, and other supports. They were patient when I went quiet for weeks on end.
My original idea was to describe the weird realization that my monthly income from SSDI is almost literally the same as my graduate school stipend from 1992-1995. It is almost as if everything that came after 1992 did not matter – I’m still essentially worth $1000/month. Factor inflation and I’m worth less. It struck me as interesting, but given that I’ve been receiving this $1000/month for ten years, I was not expecting it to turn up anything new for me.
While this wasn’t exactly a lighthearted topic, I failed to anticipate the impact my writing would have on me. Looking back at 30 years of my life, further if you count my working years paying into Social Security, is fraught with emotional landmines under the best of circumstances. Revisiting my work history and my educational journey culminating in being disabled at age 40 was perhaps a decision made in haste because I was enamored of the concept of how we assign value to people.
The short version is that I was awarded a $1,000/month fellowship for graduate school in 1992. I am awarded $1,018/month in Social Security Disability Insurance in 2020. In between, I held several jobs, earned a masters degree, did millions of volunteer hours, started this blog, received awards, and had a full, complicated, robust life.
I also sought therapy and eventually received a proper diagnosis of bipolar disorder. That led me to a second diagnosis of anxiety. I worked with the same therapist, a mood disorder specialist, for ten years. As those two bits came under control through medication and therapy, I switched providers and was finally ready to talk about my childhood trauma.
From my vantage now as a person in the midst of trauma processing treatment, I see this as a layering effect as my subconscious allowed my conscious mind to deal with so much as a time. Oh, first the moods because they can be lethal if left untreated. Then a growing understanding that my anxiety levels were not typical and could be managed. And eventually a therapist named Heather started to ask the wrong (right) questions about my childhood. Heather’s departure from the agency led me to a therapist who happened to be trauma processing certified and so an entirely new layer has been exposed to the harsh light of day.
That’s not to say that my original diagnoses were fixed or healed. It is more that I am juggling these three things and now realize it whereas before I was trying to juggle first one, then two things without realizing the third thing – the trauma – had one of my hands tied behind my back. Do what you like with that imagery before I contort it into even more grim recaps of my recent days.
I see my recovery as a gradual process and appreciate that I survived all of these years to be able to strive for some measure of happiness. Or at least, peace.
But many of those years were very hard. I disclosed my disabilities to every employer I had in the human services field and to a person, they disregarded my emotional well-being, while contorting every ounce of productivity they could wrench from my functional states. At one point, I told my supervisor that I was having thoughts about cutting myself and he never brought it up again, even though he was also a social worker. Another two tiered set of supervisors, both clinical therapists, turned a blind eye as I sunk deeper into a manic frenzy while bragging nonstop about their support of a male cisgender heterosexual colleague struggling with his own stuff. I figured I must be fine if people who were trained in the dark arts of social work were not concerned enough to help me.
Secretly, I knew that their lack of concern for me as a person beyond me as an employee reflected the deep truth that I was a deeply undeserving poor and broken person. After all, they were the good guys, the champions for the downtrodden, devoting their lives to people who were not being served properly.
In my essay, I wrote:
From a young age, we learn that our value as human beings is tied to our net worth or at least our capacity to work. Society also teaches us that there are people who cannot work (the ‘deserving’ poor) and those who choose not to work (the ‘undeserving’ poor). The exception, of course, is for very rich people who inherit their wealth and are exempted from this moral distinction by virtue of their birth, regardless of their work histories.
We are taught to give charity to deserving poor folks rather than to leverage resources to benefit all people living in poverty, to sustain the status quo and to hope like hell we don’t end up in this position.
I reject the notion that our “deservingness” is tied to our salary and investment portfolio. I reject the notion that people who can work productively for their adult lifespan, in any occupation, are morally superior to those who cannot. I reject the belief that unpaid labor lacks meaning or value for society.
But I did not clearly understand when I undertook this essay that I did not reject the label of undeserving for myself.
It wasn’t about working hard or compensation. I had jobs since I was 12 and often worked more than one. I did menial labor and felt no stigma. I walked to work when cars didn’t start. In college, I worked three jobs and kept a 3.8 GPA while taking six classes. I was a do-er. I showed up. I produced.
And I never expected to earn a lot of money. I had no idea what that might be like, nor any skills to consider a future. I didn’t invest or understand stock markets. I assumed that I would simply work until I died because the world had reversed course to a time when safety nets for retirees and disabled persons were gone like Big Steel and Montgomery Wards. I could work so I would work.
What I didn’t understand was the rising insistency of this third wave of my disability, this trauma, as it churned its way from deep catacombs of my mind, sustaining these messages planted like hideous seeds by those who did harm to me, the groomers of my childhood. Those messages affixed the notion that I was undeserving. Period.
I didn’t deserve help, even when I asked for it. I didn’t deserve resources or support or love. I didn’t deserve nice things. I didn’t deserve to be treated as well as men or younger, cuter women or otherwise decent people.
This grooming is something I knew to be true from my trauma processing work, but I hadn’t actually felt it within this context until I wrote the essay. Being treated so poorly by my supervisors around my disability reinforced these early awful messages.
So the essay editing/revising process was difficult. I was tempted to give up and stop torturing myself, but my editor Jeff kept encouraging me to keep plugging away at my own pace. I pushed through this discomfort around what it really means to have this value assigned to my life, like it or not.
I won’t pretend that I’m all better now when it comes to seeing myself as a person who is not deserving of things, but the opportunity to process all of that through writing has been helpful. I try to frame things as when I worked for pay and my unpaid work. The constraints of the actual $$$ are tough, but not as tough as feeling like my place in this world was set at the tender age of 22 and without any regard for the life I’ve led since then.
That’s actually useful insight into my trauma processing work. I actually do define myself by my contributions, productivity, etc. I beat the hell out of myself when I am not functional even sub-optimally. Realizing how deeply embedded the messages groomed into me have shaped my whole life is well, terrible.
But I have something to say so I will continue to try. We deserve for our government, our families, our employers, and our healthcare systems to do better by us. That includes me.
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