I wrote this two years ago – it’s been slightly edited:
you asked me on the phone today, why I am working if I am 100% disabled. Did you ever stop to think, that I am earning more money working? That I have an apartment, instead of “living” in a shelter for the next 6-10 years and receiving around $450/month? Yes, father, I am actually making more money working. Have you considered, that since my assault, I have been royally screwed by every single State/City Agency I have had contact with – from the Independent Living Centers, where I was kicked to the curb, and have never had the courtesy of a reply from the Center’s Manager, to having a bogus “student loan” reported as a “default” on my credit, (yeah, my credit wasn’t too good, but still) to having “advocates” for my welfare lie to me, to having housing affidavits not sent in, to just dealing with shit on my own, because I realized that no one will really help. NO ONE in this Hell Hole gave a damn, The Center for Jewish Poverty and J— included.
Look what I accomplished daddy, and tell me why you don’t seem to appreciate what I have come through. Not even our “own” gave a damn.
why do you not like me? that’s what it feels like to me. To you, I may be being “silly”, “ridiculous”, or whatever other adjective you wish to use, but dad, it’s how I am feeling. I come to you for help/advice and you tell me essentially I am full of shit. “How can I be disabled? you work. Well, guess what? I am in the “High Functioning” category of TBI. and, that entitles me to ADA protections. Hey, maybe, I should have been left in a coma, or more visibly injured. Then you wold believe I am disabled. But I don’t look or sound any different than before, so how can I have deficits? You’ve read the Neuropsycholigical report. Was that bogus?
This is similar to what I feel everyday:
“But seriously, folks, there must be a better way for tbi survivors to make a living, than having to schlep into an office and be surrounded by people who neither understand nor care about your condition. I’ve worked with disabled people before, and while our employer did accommodate them, and they were great friends with everyone they worked with, the simple fact is, they had to work like the dickens just to get by “normally.” And while people did help and reach out to them, there was always that undercurrent of pity that makes my skin crawl.
I just can’t bring myself to “play the disabled card” as a tbi survivor. I’m still up in the air about whether I’d even mention it to an employer. I certainly will not mention it to consulting clients. That would totally work against me, I believe.
I just need to keep it to myself, unless there’s an expressed need to let people know what’s going on. I guess it’s all in a day’s work for a tbi survivor… trying to figure out how to navigate the working world. Or the world in general.”
See, dad, no one really does give a shit. No one believes.
I also just cut my nose to spite my face. Joined a LinkedIn group fr mTBI survivors, and left afte being asked in email about my creds: Survivor, caregiver or doctor, and all because I posted two of the links from this email into that group.
LISTEN UP: IF YOU WANT TO KNOW THE BACKSTORY, ASK ME UP FRONT, AND IN PUBLIC.
2 thoughts on “An old letter to my father regarding my mTBI”
Personally, I think it makes sense to ask people about their “creds” when it comes to sharing information. I find it’s helpful to keep in mind that TBI folks are quite vulnerable in many ways, and they’re also a key bunch of people to exploit and take advantage of. So, people are always cropping up offering “input” that may be self-serving and designed to separate TBI folks from their money (not that we have much to begin with – money seems to disappear as quickly as short-term memory). You may know your heart’s in the right place, but the LinkedIn people don’t. Also, keep in mind that if you’re getting emails from TBI survivors, they may not be as “fluid” socially as they were before their injuries, so they can come off sounding abrupt or aggressive. I know I do. A lot. It’s a problem I have to keep working on.
I know that, but I am tired of always being asked to “prove” that I am what I am. In two weeks, I will be taking an exam, and I need an accommodation – a book stand, so I can read the test. It will probably be turned down since they’ll think I want to cheat (reasonable), but I can’t read something lying flat on the table. I will also ask for an alternative: My test printed on off-white paper. However, I am wagering that it won’t happen. I’ve been humiliated and harassed over that one simple accommodation in the past. Reading this computer screen is less troublesome than reading a book, but it is still a problem. I am not asking anyone for money, or a home aid, or a lousy $450/month. I don’t have to prove I am asthmatic. I shouldn’t have to carry papers to prove I am a brain injured American
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