(awkward silence)

i was going to write about how pissed off i get when people say “get over it”, as if that’s some kind of helpful advice instead of being aggressively dismissive.  and how it’s like telling some who tripped not to fall.  and then make some kind of vague threatening statement along the lines of “i’ll show *you* how to get over it”.  but instead i’m going to talk about the awkward pause after people ask me what i do for a living.

this is a tough question for me because, well, for all intents and purposes, i don’t *do* anything.  i don’t work, go to school, volunteer.  i get money from the government and am applying to get more.  i’m disabled, and honestly, i spend most of my time smoking pot and watching tv.

and you know what?  with all my self-righteousness, even in an entry against/exploring/unearthing ableism, it still embarrasses me to admit that.  i shouldn’t be allowed to do anything so luxurious with my time.  just like i shouldn’t spend money on non-essentials because i’m on general assistance.  these always seem related to me.

[quick note: we don’t know who’s writing this entry.  i don’t why we’re saying that but some seem to think it’s important]

honestly, one of the reasons i think i am so uncomfortable around funcitonals (people who function in some traditional/tangible way), is that i don’t know how to explain my life to them.  but maybe some of this is my upper-class background, telling me that what i do for a living largely defines me and should express my passions and intellect.

part of the problem is also explaining my disability.  how am i disabled?  i’m crazy.  basically.  i have really bad PTSD and i’m a multiple( personality).  i go into an incapacitating panic when i have to do anything required.  i have little kid parts come out and yell “bitch!” (at ourselves) and ones who just freeze and can’t respond.  i am scared of basically everyone and make as little contact with the outside world as possible.  i mean, that’s pretty crazy as the term goes.

either way, i don’t know how to tell people that i heal for a living.  that the only 2 appointments i regularly have in a week are therapy and my support group (for multiples).  that i don’t have to be awake at a certain time.  that i don’t have to answer to anyone regularly (except the government, i guess).  that i don’t do any of the things they consider tasks/chores/work except *very* occasional grocery shopping and rare showers and laundry.

and that even this is almost unbearable.  this life, this endless vacation, is so freakin hard that i am regularly in crisis, even though there is nothing i have to *do*.

do?  what do i do?  well, i’m broken.  and i’m trying to work on that.

do?  i’m crazy for a living.  the government pays me.  i actually get a bonus if i’m *extra* crazy.  so cross your fingers.

do?  i am by default left largely outside of the capitalist system.  so i guess i’m a revolutionary.

i’m a columnist/song writer/artist because hobbies automatically become careers if nothing else is there i guess.

do?  i spend a lot of time dressing up barbies in scraps of fabric without sewing.  and putting things on my ebay watchlist and then deleting them.  and checking craigslist missed connections for something that looks like it might be me.

my boyfriend, mostly.

have you ever played this game katamari?  that and run away from my panic.  sometimes even both at the same time.

did i mention i smoke a lot of pot?

i just don’t have an easy way to talk about it.  to tell people how i am disabled is so graphic and intimate.  PTSD?  i mean, why should i have to tell you that i was so severely traumatized that i now can’t function?  i barely *know* you.

i don’t know.  it’s tough.  (blah blah blah complain complain.  isn’t the whole point that my life isn’t remotely tough?)

what do i do?  (sighs).  i write entries that hopefully distract people enough so they don’t notice that i still don’t know how to answer this question.

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8 Responses

  1. Good Post. I, myself, have cerebral palsy, and am also on SSDI. At least, I have the advantage of having a visible disability.

    i am by default left largely outside of the capitalist system. so i guess i’m a revolutionary.

    Bwa-ha-ha!!

  2. I understand completely. I have the same conversation all the time with people I haven’t seen in a while. The only real difference being that I’m still fighting with social security, so I have to give the arguably more embarrassing answer of “my wife supports me.”

  3. I get this. It’s a privilege people without disabilities have, to think that asking someone what they do for a living is always going to be small talk, just this simple little thing that isn’t personal and has an easy answer. Even I, unemployed as I am, can say “Oh I’m looking for work right now,” especially in this economy and living in Michigan, people get that. But there is a huge stigma about not working and not actively trying to work, and there is an even huger stigma about the kinds of disabilities people have that mean society makes it impossible for them to work.

  4. Ugh, been there.

    If it helps at all – and I don’t know whether it will or not – there are some people who just get off on belittling others.

    One particular relative of my other half… when I first met him at a “family occasion”, I was on welfare benefits, and I got sneered at for it, and given the third degree about what exactly I planned to do in order to get a job.

    Then my condition settled down, and I moved in with my boyfriend, and got a part time job. Another “family occasion” and the same bloke was preparing for another good sneer about benefits and I was looking forward to wiping the smile off his face… no chance. It was “but of course that’s only part time” and “at least with Steve supporting you it doesn’t matter that you earn so little”.

    Now I have enough income to be able to make a reasonable contribution to the household, cover all of my personal and disability-related expenses (dental work, taxi fares, prescriptions, etc), and still have a little bit of cash for myself – no one could possibly accuse me of spending Steve’s money. So now, this guy criticises the *type* of work I do, or the limited promotion prospects…

    I could be the Celestial Empress of the Galaxy and this guy would still be sneering at me. But you know what? If the only thing in the whole wide world that makes him happy is being nasty to people – if that’s the best thing he can think of to do/say at a family gathering – if his manners are that appalling – if he’s so insecure that he needs to constantly put others down – that’s his problem, not mine, and he is the one who is ****ed up, not me.

  5. THAT awkward silence! I know it well. I’ve played with all sorts of answers to this question, from the truth to what has sometimes been a truth and sometimes a semi-truth (“I’m studying”), to distractions, and so on.

    Only very recently have I played with just saying “I’m at home at the moment”, which, since I have a child, immediately makes my conversational partner think “able-bodied stay-at-home mum”. Depending on their attitude, they sometimes take this opportunity to condescendingly pat me on the head and me how great a mother I am for staying at home (uh, whatever, dude, so if I worked outside the home I’d be a bad mother?), or to henceforth treat me like a witless marshmallowperson.

    Sure brings out the truth in people.

  6. Instead of an awkward silence, I get accolades for my bravery, fortitude, and strength. People call me an inspiration to others because I took off only one semester when I had brain surgery and work through crippling headaches and seizures.

    What most people don’t know is that not working would send me and my husband into bankruptcy in very little time because I’d have no health care coverage. And if I don’t have health insurance, we can’t afford to pay the more than $1000 per month in prescription meds that I take. And forget about the costs associated with doctor’s visits, lab work, CAT scans, MRIs, etc. If I stopped working, neither I nor my husband could get private insurance because we both have pre-existing conditions.

    Fortitude? Pshaw — I kept working because I didn’t have another option available to me, not because I’m strong or because I want to inspire others. I work because I can’t afford to be without health insurance while fighting with the Social Security Administration, and I certainly can’t leave my husband without coverage altogether.

    There is, however, a silver lining to this dismal cloud — it’s called retirement. In a couple of weeks, I will be 50 and eligible to take an early retirement that will safeguard the health benefits for both me and my husband. So the final exam that I administer on May 21st will be my last. I will soon be retired.

    But then, when people ask me what I “do,” my response still won’t generate that awkward silence. I’m sure that the accolades for fortitude, strength, and inspiration will be replaced with comments about lucky I am to be retired while I’m young enough to truly enjoy it. I just can’t win! 😉

  7. My post for BADD talked about this too, but I didn’t name it as clearly as you have – the awkward silence: that’s it exactly. Having to come up with an answer to what do I do… I wish my sarcastic tongue would come out when I need it to.

  8. Thank you for the beautiful post. Really thoughtful and thought-provoking. Even as a person who has represented dozens of disabled people in claims for SS benefits, I’m embarrassed to say that I never thought about it like this! I always accept the answer when someone tells me they’re “on disability.” I know not to question their situation if they don’t offer, so instead, I share my experience of being an advocate and try to commiserate with the disabled person about the utter foolishness of governmental bureaucracy. Maybe this isn’t such a great tact to take, though. Well, at the very least, I promise to start thinking twice about asking what someone else does for work/a living. Thanks again for the wonderful, enlightening post!

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