Skip to main content

Our culture puts immense value on individual independence and work.  And, I think this is more than just a significant vestige of the puritan work ethic.

One of the first questions I was asked when being introduced for the first time (before I started wearing a "uniform" which made the answer fairly obvious), more often than not, was "So, what do you do?"

For many of us, our vocation is not just "what we do," but very much wrapped up in our very identity, a huge portion of "who we are."

It's not just a matter of ego, although seeing the fruit of our labors is certainly important to a sense of self-esteem.  There's the not inconsequential matter of contributing to the communities of which we are a part, and of finding meaning in our lives.

I was not surprised, then, when I began my now fairly long (though recently interrupted) career in inner-city mission work, mostly with people living in poverty, that a near universal goal was finding work sufficient to become not only fully self supporting, but beyond that, to make a difference in the lives of others.

For those of us with disabilities, there are even more obstacles to reaching such a goal, and many pitfalls.  Now that I've "sat on both sides of the desk," I've come to appreciate even more the importance of meaningful work in our lives.  And, yes, I've returned to my career, with both excitement at the many possibilities, and some trepidation with respect to the risks.

KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.

Permit me to tell some stories to give you a sense of what I'm contemplating as I've spent the last six-weeks working full time after about an eight year hiatus for reasons of attending to my own health issues first, and extended to allow me to take care of my elderly mother.  I've changed the names for obvious reasons.

When I first met Michael, he was 17, abandoned by his family, and living in a private group foster home for the severely developmentally disabled.  I visited him with and at the request of his social worker from a state agency, because he was falling through the cracks of the system, living in an inappropriate setting for him, and she thought the guidelines of my small religious nonprofit might be more flexible than those of the state, and allow me to better individualize a program for him.  It was a depressing place.  Diagnosed with fetal toxic syndrome, Mikey had some serious physical and developmental deficits, but was highly verbal, and because of the severity of the limitations of the other residents, he found himself isolated and depressed.

He wanted to join the Job Corps -- that would fix everything.  They'd train him for meaningful work, and he could support himself -- become his own man.  One problem.  He couldn't fill out the application forms acceptably, let alone pass the physical and educational requirements, minimal as they were.  His Vocational Rehabilitation worker was insistent that even a G.E.D. was an "unrealistic goal," and that sheltered workshops were likely his permanent lot in life.  (I'm not suggesting that such places are bad, just that we need to give people a chance to move beyond them.)

I was unable to find him a better placement.  I ended up becoming his foster parent.  We spent literally months practicing counting change, so that he could make simple purchases at the store without just handing all his money over to the clerk, and having them extract the right amount for the transaction (one of many situations in which Mikey found himself that sometimes led to his being exploited).  Once he got it, he had it down pat.  When he was old enough, we got him on Social Security Disability Income, and I advocated fiercely for his continuing to receive vocational training, and ultimately a G.E.D. course, which he successfully completed.

And there was the rub.  He still wanted to work and get paid for it, the payment in and of itself making the enterprise "meaningful" to him.  It placed a value on his labor, and by extension on him.  It also put his Social Security benefits in jeopardy.  So, we walked a tightrope for a long time, and ultimately he did, in fact, lose his benefits.  You see, the Social Security Administration defines a qualifying disability as being unable to perform meaningful work.  It's a Catch-22.  There are provisions for "trial work" periods, but even volunteer work can be used as evidence of non-disability.

Suffice it to say, that getting Mikey's benefits back was a lengthy and laborious process, one which he was not equipped to surmount on his own.

It puts do-gooders like me in a horrible position.  On the one hand, we want not only to respect the autonomy of our clients, but support their decisions and goals.  And yet, are we doing them any favors by encouraging (or even assisting) them in putting in peril their only dependable source of income, perhaps leading to dire consequences.  (The answer for me has been to inform them, as best I can, of those risks, and then support their decision in the matter.  I do still have conscience struggles with these issues.)

Sue lived on the streets.  She was in serious denial about her disability, having been variously diagnosed during her history of several psychiatric hospitalizations.  Her symptoms of schizophrenia were fairly obvious even to those of us who have had just enough formal training in psychology to make us dangerous.  Her use of crack cocaine didn't help those symptoms at all.  She supported herself by turning tricks.  I met her because she frequently ate at our feeding program, and used our showers.  Her plan was to set money aside from her take to enroll in beauty school.  The problem was that she had no high school diploma, and spent everything she made (and then some) on just surviving, and supporting her habit.  Talking her into returning to psychiatric treatment was a hard sell, but I convinced her that with documentation of her disability in hand, we could get her a dependable income that didn't rely on her selling her body, find her affordable housing, and perhaps even help her get clean.  She clung to the dream of becoming a hair stylist, and I didn't discourage it, even when it was pretty well dashed by her testing positive for HIV.  At least her last few years were spent off the streets, getting necessary medical and psychiatric care, and filled with hope of a future which included "meaningful work."

I can't tell you how many of these stories I have.  It seems like almost all of the people I have met through my work have a major employment-related component to their stories.  And getting people onto SSDI and/or a job is not all that my work is about.  Supporting people in their efforts to emerge from poverty or other marginalizing forces is.  It's just "employment" is what this diary is about, so that's why I picked these two stories as illustrative.

So, now we come to me.  I don't know whether you can tell from the foregoing that I love my work, but I do.  I've had a passion for people who have been pushed or have fallen into the margins of society ever since I was a kid.  I once had a dream of changing the world to eliminate the problems that give rise to such suffering.  I found that it is more realistic and filled with rewards to focus on the individuals whose lives come to touch my own.  Perhaps I've settled.  I don't think so.

But for the past several years, I've been away from it, and have missed it terribly.  I hope I'm not being too self-aggrandizing to say that I'm good at it.  I admit to taking some pride in programs I have developed having been used as models.  I've also made some colossal mistakes.  But, I've forgiven myself for those, since my intentions were pure, and I've learned from them.

It's been hard for me to see poverty going unaddressed in my hometown.  It's not as obvious as it is in the big city -- and there are reasons for that, although they do not include it being any less prevalent here, just more hidden from obvious view.  So, now that my health status is more stable, and I've been relieved of the primary responsibility for my mother's care, I've returned to what is for me "meaningful employment."

I wrote a grant request to start a downtown mission in my little city, as a pilot project to adapt successful inner-city programs to a less urban setting.  It covers the basic operating expenses for three years.  I need to get busy fundraising for program costs.  It's a gamble.  It puts me at some considerable risk physically and financially.  If I were on the other side of the desk, with me as a client, I'd probably try to get me to take a very close and hard look at those risks.  But I, too, need to be "meaningfully employed," and this is what gives my life meaning.  (And those of you who share my religious inclinations can understand that I believe it is what I am "called" to do.)

It's making me think again about the role of work in one's life -- my life... the lives of those with whom I work... the lives of people living with disabilities, whether they be physical, mental or societally imposed.  I don't know what conclusions I will draw.  My guess is that they will remain fluid and evolving.  I kind of hope so.

Meanwhile, I'd love to hear your thoughts about "meaningful employment," what it means to you, and to what extent it necessarily means "career" and/or "paid work" for you.

Your Email has been sent.
You must add at least one tag to this diary before publishing it.

Add keywords that describe this diary. Separate multiple keywords with commas.
Tagging tips - Search For Tags - Browse For Tags


More Tagging tips:

A tag is a way to search for this diary. If someone is searching for "Barack Obama," is this a diary they'd be trying to find?

Use a person's full name, without any title. Senator Obama may become President Obama, and Michelle Obama might run for office.

If your diary covers an election or elected official, use election tags, which are generally the state abbreviation followed by the office. CA-01 is the first district House seat. CA-Sen covers both senate races. NY-GOV covers the New York governor's race.

Tags do not compound: that is, "education reform" is a completely different tag from "education". A tag like "reform" alone is probably not meaningful.

Consider if one or more of these tags fits your diary: Civil Rights, Community, Congress, Culture, Economy, Education, Elections, Energy, Environment, Health Care, International, Labor, Law, Media, Meta, National Security, Science, Transportation, or White House. If your diary is specific to a state, consider adding the state (California, Texas, etc). Keep in mind, though, that there are many wonderful and important diaries that don't fit in any of these tags. Don't worry if yours doesn't.

You can add a private note to this diary when hotlisting it:
Are you sure you want to remove this diary from your hotlist?
Are you sure you want to remove your recommendation? You can only recommend a diary once, so you will not be able to re-recommend it afterwards.
Rescue this diary, and add a note:
Are you sure you want to remove this diary from Rescue?
Choose where to republish this diary. The diary will be added to the queue for that group. Publish it from the queue to make it appear.

You must be a member of a group to use this feature.

Add a quick update to your diary without changing the diary itself:
Are you sure you want to remove this diary?
(The diary will be removed from the site and returned to your drafts for further editing.)
(The diary will be removed.)
Are you sure you want to save these changes to the published diary?

Comment Preferences

  •  Here I am, begging for writers again. (13+ / 0-)

    Next Wednesday is covered, but after that, it's all open dates.  Please consider signing up for one of them.

    Wednesday Diaries

    Nov 14  Clytemnestra
    Nov 21
    Nov 28
    Dec 05

    Yours truly, Father John-Mark (jgilhousen) is the moderator of KosAbility’s Wednesday diaries and maintains that schedule. If you’d like to sign up for an open Wednesday, reply to this comment, send me a private message or email me at PadreJM[at]excite[dot]com.

    Sunday Diaries

    Nov 11  FloridaSNMOM
    Nov 18  left over flower child
    Nov 25  Thanksgiving Holiday
    Dec 02  michelewln
    Dec 09  chicating
    Dec 16
    Dec 23

    Nurse Kelley (KelleyRN2) is the moderator of KosAbility’s Sunday diaries and maintains that schedule. If you’d like to sign up for an open Sunday, reply to this comment, send her a private message, or email her at KelleyRN2[at]gmail[dot]com.

    The content of the KosAbility diaries is important to many folk who depend on the exchange of information and ideas about their struggles with real life-changing conditions. The moderators of these diaries will not tolerate rude, disruptive, off topic, and/or threadjacking behavior. If in doubt, read our mission statement in the diary.

    Ad creandos magis et meliores democratas.
    h/t to codairem for correcting my dreadful Latin grammar.

    by jgilhousen on Wed Nov 07, 2012 at 02:04:50 PM PST

  •  "meaningful work" (13+ / 0-)

    That is a phrase that came up frequently when I was in school for Occupational Therapy. The meaning can range from a hobby to 'gainful employment' to volunteer work depending on the person in question. One of the goals we had as therapists in training was discovering what those words meant to the person in question and then finding ways through accommodation or compensation to achieve it if possible. Sounds a lot like what you are doing doesn't it Father?

    For myself, meaningful work was becoming an Occupational Therapist. For now however I've had to reassess my goals due to my own health issues. Now it applies to getting house work done, raising my kids, and helping others where and when I can, even if that's just advising someone I know online of things they may need post surgery, or what help may be out there if they just ask for it, or thinking of a way around the problem.

    I do find myself constantly looking for methods of turning what I can still do into gainful employment however, even with my limitations. I miss it. I think the people I helped on my clinicals would tell you I was pretty good at it considering I was just starting out. I'm not overly religious, not in the same way you are, but I've always been drawn to healthcare (I was a CNA for several years as well though I let that go when I was pregnant. Pregnancy and caring for Alzheimer's patients sometimes doesn't mix well), and this is something I've felt that draw pull me towards. I regret not finding a program when I was younger and in better health, and I did try but there was nothing near me (1.5 hour commute) and I had an autistic son I felt I had to stay close to.

    Perhaps that's why I've been dragging my feet on my own disability claim. I still feel that pull towards meaningful work.

    "Madness! Total and complete madness! This never would've happened if the humans hadn't started fighting one another!" Londo Mollari

    by FloridaSNMOM on Wed Nov 07, 2012 at 02:49:22 PM PST

    •  A delicate balance, indeed. (6+ / 0-)

      Prudence pulls one way, passion another.  I would like to have a less ambiguous handle on some of the definitions which come into play here.  But, you're absolutely right, the definitions are going to vary wildly from individual to individual.  The fact that social service program guidelines in general, and those of SSDI in particular, are so arbitrary and inflexible, lead me to believe that I am probably better off resisting the temptation to apply a palette of only black and white.

      And, you're right, a lot of what I do overlaps with several professional disciplines, including O.T.  I try to stay within the limits of my expertise, and leave professional therapy to those who have the credentials to provide it, but I will admit that sometimes I have to push the boundaries on that a wee bit.  Best case, I can maintain a good working relationship with the professionals involved so as to provide together a reasonable level of coordinated client-centered and -directed care.

      Ad creandos magis et meliores democratas.
      h/t to codairem for correcting my dreadful Latin grammar.

      by jgilhousen on Wed Nov 07, 2012 at 03:11:41 PM PST

      [ Parent ]

      •  One of the biggest issues for me (6+ / 0-)

        with going on SSDI is keeping medicaid. I may be able to find part time work I can handle and actually feel like I'm doing something will supplementing our income if I didn't have to worry about losing my health insurance. The election last night gave me renewed hope that I may be able to find something like that in a year or two, depending on our Governor. I may have to wait until Scott is voted out in 2014 and Medicaid is actually expanded here, but I would love to have that option.
        I'd love to be able to pull a part time schedule, or an on call schedule on the days my breathing is good and be able to use my degree, or even get a job with a non-profit helping to coordinate care, or find solutions, like funding for small durable medical equipment needs often not covered by medicaid/medicare. But right now I can't risk trying it to see if my body will tolerate it, because I can't risk losing my medicaid.

        But after last night I'm hopeful that day will come.

        "Madness! Total and complete madness! This never would've happened if the humans hadn't started fighting one another!" Londo Mollari

        by FloridaSNMOM on Wed Nov 07, 2012 at 03:25:50 PM PST

        [ Parent ]

        •  Medicaid varies so radically from state to state.. (5+ / 0-)

          especially now that so many waivers have been issued, but most places you get to keep your Medicaid until Medicare kicks in a year after being granted SSDI.  You might want to get definitive information on that before making a decision.

          If you were in my area instead of the opposite corner of the continent, I could definitely use your services as a consultant.  (In fact, we might be able to work something out in regard to reviewing documents in our program planning process, which might be possible at a distance.  I'm not sure whether it would work for either of us, but something to think about.)  I'm pretty sure there are NGO's in your area that are likely to have similar needs.

          Ad creandos magis et meliores democratas.
          h/t to codairem for correcting my dreadful Latin grammar.

          by jgilhousen on Wed Nov 07, 2012 at 03:46:15 PM PST

          [ Parent ]

          •  FloridaSNDad's SSI just switched (3+ / 0-)
            Recommended by:
            jgilhousen, ladybug53, second alto

            to SS. He's supposed to get medicare right away because he's been on disability since he was 18. He's had medicaid for years. When his payments went up (by $400/month) they took him off medicaid, put him on medically needy with a 989 monthly buy in before any help from medicaid would kick in. I'm not sure yet what's going on with his medicare we're trying to figure that out. They also switched me from medicaid to medically needy, but my buy in is only $9. I'm afraid if I'm getting SS too or SSDI it's going to really put us over and the buy in will be so high for me as to be useless as it is for him right now. And if I try to work instead, then those buy ins are going to go up as well. Now someone told me that when the ACA kicks in SS payments will no longer count against medicaid, at that point I should be able to do it, plus with the expanded medicaid I'd have to be earning a lot to not qualify (and be able to buy something on the exchange).

            As to your program, if that's something you need help with or are interested in drop me a kos mail. I can at least look things over and see if it's something I can do, or just to help you out. I don't mind volunteer work either ;).

            "Madness! Total and complete madness! This never would've happened if the humans hadn't started fighting one another!" Londo Mollari

            by FloridaSNMOM on Wed Nov 07, 2012 at 04:34:27 PM PST

            [ Parent ]

            •  Thanks. We're just starting a comprehensive... (3+ / 0-)
              Recommended by:
              FloridaSNMOM, ladybug53, second alto

              local needs and resources assessment project, so adapting specific programs to meet the needs we identify and can document is still a little bit down the pike.  I'll definitely be in touch privately when we get to that stage, hopefully sooner rather than later.  (I'm hoping for early 2013, which, coincidentally is about the time our local United Way begins accepting allocation requests.)

              As for asking you to do it as a "volunteer," here's my rule of thumb:  I try not to request freebies from people for whom the activity is the source of their livelihood, especially if I'm initiating the contact -- which in this case, I did.

              If a professional comes to me and offers their services, I treat it like any other volunteer.

              I've never worked with a long distance professional consultant, but with all of the communications technology now at our disposal, it's probably high time I step out of my horse and buggy.

              Ad creandos magis et meliores democratas.
              h/t to codairem for correcting my dreadful Latin grammar.

              by jgilhousen on Wed Nov 07, 2012 at 04:48:03 PM PST

              [ Parent ]

  •  What an excellent diary (12+ / 0-)

    There is a problem with how we value ourselves and how we value others.

    We see this at all levels and in all ways - from the Forbes list of the richest people in the country to jokes and to people trying to make some minimal amount of money.

    "meaningful" employment is a different thing from "gainful" employment; a "meaningful life" is different from making a lot of money.

    Is the world better for your passage through it?
    Will it be worse for your passage from it?
    Did you make people laugh?
    Did you share joy?

    I'll close with a joke my rabbi used to tell.

    Seems a guy dies and finds himself on a cloud. "Phew!" he thinks, "made it!"

    "Just a minute", says an angel "Why should we let you into heaven?"
    "Well, I kept kosher all my life, I said morning prayers and evening prayers, I fasted every ..."
    God interrupts "Down there on Earth, you got to be quite a wealthy man, didn't you?"
    "well, umm... , uhhh.... yeah I did OK"
    "Tell me, did you ever give money to charity?"
    He's stumped!  Think think think!  Finally!

    "YES! Once, I gave 10 cents to a blind beggar on the street".
    God hand a coin to the angel and says "Give this fellow his dime back, and tell him to go to hell".

    (My rabbi was a mensch).

  •  Oh do I identify with much of what you have said. (4+ / 0-)

    I have helped people, physically, all my life, through both paid and volunteer work. My disabilities, although as a result of a chromosomal disorder, only really became a problem in the last five - seven years, since Dan died. It took me a long time to finally admit that I couldn't do it alone any more, that I needed and need a consist income and that I was no longer able to earn it myself. It also took me a while to reconcile the image I had of myself, as someone who helped people physically, with a new image I needed to form of myself, that I could help people in other ways, and that I could only do what I could. Yes, there was and remains the issue of "calling." Fortunately, my calling has been to help people in a way that it is physically possible for me to do.

    It is so important, it seems to me, to allow those with disabilities to have the security of regular income if we are not able to earn it ourselves, but also to make it possible within the rules for us to contribute to the world in whatever way we would like to and are able to, whether for pay or not, without jeopardizing our security. I am fortunate that in Ontario, we are able to earn a small amount over a year without it threatening our disability payments. It seems to me, the rules for SSDI need to change.

                    Just my two cents,
                      Love and Hugs,

    Torture is ALWAYS wrong, no matter who is inflicting it on whom.

    by Chacounne on Wed Nov 07, 2012 at 04:14:51 PM PST

    •  Thanks for the thoughtful and personal comment. (3+ / 0-)
      Recommended by:
      FloridaSNMOM, ladybug53, second alto

      I agree with you about the SSDI rules here in the US, and once again, we could learn a thing or two from you, our northern neighbors (so long as it doesn't involve tar sands [wink]).

      Unfortunately, I don't think there is the political will here, either on the part of our elected leaders or the citizenry at large, to apply any substantial fix to the problem in this current economic climate.  That will not deter me in my advocacy efforts toward a long-term goal of better public policy.  Meanwhile, I think we need to learn to be creative in meeting people's needs within the existing structure.

      I also agree that we need to work toward creating more opportunities for people with disabilities, and people living in poverty for other reasons, to achieve income stability and meaningfully occupy themselves, to whatever extent the vehicles for meeting those two goals overlap or not.

      There are some work-arounds within the existing structure to minimize the risk of losing one's disability benefits by reason of having their activities (paid or unpaid) deemed as evidence of employability.  The one I utilize the most is documenting as fully as possible any accommodations which are made to facilitate such activities, and to the extent possible, show them as unreasonable to expect of potential employers.  It is tedious, and one sometimes has to get uncomfortably close to fiction writing, but it is what it is.

      Ad creandos magis et meliores democratas.
      h/t to codairem for correcting my dreadful Latin grammar.

      by jgilhousen on Wed Nov 07, 2012 at 04:41:06 PM PST

      [ Parent ]

  •  Accepting disability has been a long road (4+ / 0-)

    For me it's required a entire change of focus. Most of my life was spent being the smart one. Impeccable memory, quick to learn, not formerly educated but quick and smart. Now...well...not so much. I burn rice if I don't set a timer for each step and for whatever reason can't get it together enough to accurately send out a reminder for a monthly buying group. I used to be the person everyone came to for tech solutions but now I can't even make those new fangled phones work.

    The new was a huge surprise, totally unexpected. Art, I found art. I'll never make a living at it but I am absolutely in love with the day in day out process of fiber art. I started out as a traditional quilter, looking for something to do with my hands the first time I quit smoking, 15 years later I dye fabric and glue and sew to the delight of my soul. When I'm not feeling particularly on the artistic cutting edge I use the craft side to make lap quilts for charity. Keeps me busy practicing the basic skills and gives people in need beautiful blankets. A win win.

    It's still frustrating to not have a brain but I'm getting better at figuring out how to deal with it all and part of dealing with it is being more honest with myself and with others.

    •  Wow. For someone who self-identifies as... (4+ / 0-)

      not having a brain, you sure packed a load of wisdom into a few short graphs.

      I can see how artistry and craft can definitely be especially meaningful pursuits.  I'm not gifted enough to consider myself an artist, but in things which involve following patterns or instructions, I can usually become a competent craftsman, and I find it highly rewarding.  Especially so when the end product can serve a charitable purpose.

      I'm very glad you brought up the arts.  I actually thought of a financially struggling (non-disabled) artist friend of mine as I wrote today, but didn't bring him up because (1) the piece was already overly long even after I tried cutting it down, and (2) his being neither disabled nor a client seemed to make reference to him "off-topic."

      It seems to me that arts and crafts might be an enterprise which could provide both tangible and intangible rewards.  I've been thinking about ways to incorporate it into what we do at the Center.

      Ad creandos magis et meliores democratas.
      h/t to codairem for correcting my dreadful Latin grammar.

      by jgilhousen on Wed Nov 07, 2012 at 05:06:08 PM PST

      [ Parent ]

      •  Most artist are struggling (3+ / 0-)
        Recommended by:
        FloridaSNMOM, second alto, jgilhousen

        it just isn't valued in this society which is very sad. I find it ironic that we judge civilizations by their art but most societies don't value or support the artists.

        Many children learn better through art but because art isn't valued they're the first programs cut in tight budgets eliminating the only connection to education for many students. We have a world that tells us "save money, live better." Art is not cost effective. You can stamp out a zillion of "those" for much less money. My hope is that value and appreciation of craftsmanship and artistic application can come back into style and artist can make a little money again.

        I am considering the possibility of doing a group art project in just the sort of place you are trying to create. I've seen examples of wonderful projects done in schools. Unfortunately my health issues are a barrier. Stress, even good stress just breaks me.

  •  This is a great diary and great topic. (5+ / 0-)

    I'm just trying to hang on another couple of years.   I'll be eligible for Medicare next July, but need another year to be able to retire at full benefits.   And since I won't really make enough to live on, getting 100% of what I've earned is pretty important if possible at all.   I now work the equiv of three jobs....over 24 hours as part-time clergy, 32 hours on a telephone job, and 20 hours unpaid as a babysitter for my granddaughter.   That's 7 days of every week with no holidays or days off in the schedule.  

    I have so many chronic conditions I have no doubt I could qualify for disabilty EXCEPT...two of my jobs are largely done from home.   One I really hate but it provides good insurance.   The other, as clergy, is done primarily from home, by phone, with a few hours of actual physical presence at the church each week.  

    I wish we had a way to individually evaluate civilian physical limitations to allow partial support.   Someone might be 50% or 90% disabled, and to be granted payment to cover insurance and basic financial support to that level, with possible employment to cover the rest.   That could at least allow me to drop the job I detest, and give time to devote to the people in my church community......

    It would make so many lives richer, rather than locking all of us into a "one size fits all" structure that leaves most of us in pain and need.

    "Because inside every old person is a young person wondering what happened." -Terry Pratchett

    by revsue on Wed Nov 07, 2012 at 05:35:49 PM PST

    •  I've never understood the rationale... (4+ / 0-)

      for SSDI being an all or nothing proposition.  Private Disability Insurance, Workers' Comp., and Military Combat Disability all have provision for "partial" disability determinations with corresponding benefit rates.

      That said, with all the talk of Social Security's "looming insolvency," I doubt if we'll see any expansion of the SSDI program any time soon.

      My retirement fund is not fully vested since (1) I, too, have had a number of part-time postings (read that, full time work funded at part-time level), and (2) had to take an extended leave of absence.  So, I relate to the uncertainty of your situation.  I often have to use "consider the lilies of the field" as a mantra to relieve the resultant occasional anxiety.

      Like I told my superiors, I'm cool with my vow of poverty, but might have thought twice about a vow of abject poverty.  Actually, it most likely would have made no difference in my decisions at all, but it's nice to ventilate once in a while.

      Ad creandos magis et meliores democratas.
      h/t to codairem for correcting my dreadful Latin grammar.

      by jgilhousen on Wed Nov 07, 2012 at 05:59:27 PM PST

      [ Parent ]

  •  The thing that has pushed me most towards (3+ / 0-)
    Recommended by:
    jgilhousen, second alto, FloridaSNMOM

    considering disability is the inability to do meaningful, useful work on a reliable basis.

    There are days where getting up and getting dressed is exhausting. There are days where I feel normal. I don't know what I'm going to get. Some normal days suddenly have the bottom drop out of them, and my plans go to hell. It's the way it is, and the baseline minimum I can count on is "I can always get from my chair or my bed to the bathroom" and that's not particularly employable.

    The trick is going to be explaining this to someone. I'm too articulate for my own good.

    When you come to find how essential the comfort of a well-kept home is to the bodily strength and good conditions, to a sound mind and spirit, and useful days, you will reverence the good housekeeper as I do above artist or poet, beauty or genius.

    by Alexandra Lynch on Wed Nov 07, 2012 at 06:32:54 PM PST

    •  Absolutely. (2+ / 0-)
      Recommended by:
      second alto, FloridaSNMOM

      On my good days, I can take on the world.  On the bad days, the world completely overwhelms me.  And we won't even begin to talk about the consequences of "just pushin' through it."

      It seems to me that the very essence of "reasonable accommodation" is recognizing and making allowances for the variable nature of many, if not most disabilities.

      Ad creandos magis et meliores democratas.
      h/t to codairem for correcting my dreadful Latin grammar.

      by jgilhousen on Wed Nov 07, 2012 at 06:39:03 PM PST

      [ Parent ]

  •  My 7:00 witching hour is approaching. (1+ / 0-)
    Recommended by:
    second alto

    I'm still at the office, and need to shut things down and get out of here.

    OK, I'll admit it.  Saying "at the office" feels good.

    Anyway, I'll be offline for awhile, but I'll check back in after I've gotten home and gotten some grub into me.

    Ad creandos magis et meliores democratas.
    h/t to codairem for correcting my dreadful Latin grammar.

    by jgilhousen on Wed Nov 07, 2012 at 06:40:36 PM PST

  •  I suspect that (3+ / 0-)
    Recommended by:
    second alto, jgilhousen, FloridaSNMOM

    exposure is still a big part of getting people with disabilities into the workforce. We need not only employment for people with disabilities, but employment in visible jobs that can break stereotypes about disability. Too many people, even vocational rehab specialists, still underestimate the ability of people with disabilities to work at competitive jobs.

    Unfortunately, one dilemma I see is so that many of the jobs that people with disabilities get are focused on helping other people with disabilities. Those jobs are absolutely necessary, and we still need more people doing them, but people in those jobs tend not to be seen outside the disability community. I'm seeing this though my membership in the National Association of Law Students With Disabilities. Most of our alumni work in disability rights, and I've found that the disability plaintiff's bar is a fairly small, insular group. I see the attraction of working disability-related jobs, because a lot of us are trying to be the lawyers that we once needed ourselves (and I'm no exception), and we certainly still need more disability rights lawyers, but one of our priorities is also getting lawyers with disabilities into other practice areas so that law students with disabilities don't feel obligated to go into disability law. The same trends are probably true outside the legal profession.

    I don't see a simple solution to this. It might be just a matter of time, but I don't find that answer very satisfying.

    •  I think some activism could push the timeframe... (1+ / 0-)
      Recommended by:

      forward to one that better suits us -- perhaps not in the current economic climate, but neither do I think we need to wait for pie in the sky by and by.

      Ad creandos magis et meliores democratas.
      h/t to codairem for correcting my dreadful Latin grammar.

      by jgilhousen on Wed Nov 07, 2012 at 08:31:41 PM PST

      [ Parent ]

  •  My job is something I do so my family won't starve (3+ / 0-)
    Recommended by:
    second alto, jgilhousen, FloridaSNMOM

    Period. If I could survive without it, I'd quit in a heartbeat. I do hard, unrewarding, thankless tasks that most of the time no one shows any appreciation for, much less anything like the money I'm worth.

    I would love to be able to do work that is appreciated and helpful, that I love doing. Sadly, I don't believe I will ever be able to. I dream of a day when I don't have to do soul-destroying work, because that's all that's left in my neck of the woods.

    •  I am so sorry. (0+ / 0-)

      I got my first job (as a printer's apprentice) when I was 12, and except for a few years in my youth when I took grunt-work summer jobs, have always had work that was rewarding on many levels -- sometimes working for dreadful bosses (including a couple of crooks), but not without some real emotional rewards.

      I definitely feel for those who are consigned to soul-crushing jobs.

      Ad creandos magis et meliores democratas.
      h/t to codairem for correcting my dreadful Latin grammar.

      by jgilhousen on Wed Nov 07, 2012 at 08:28:40 PM PST

      [ Parent ]

  •  I know I'm late to the party (0+ / 0-)

    But I couldn't be here Wednesday. You all know how it can be.

    Work, and the self-respect it brings, doesn't just affect US. Unfortunately, it also affects how others see us.

    I can fool myself a little with my crafting, making my once-in-a-blue-moon sales, and knowing that yes, that hand crafted product is top-notch, but it's not what I was made to do. THAT has been taken from me now (before the TBI, I could have gotten a degree in programming and rocked it-it's literally like an entire floor of the library in my brain is gone. It's SO much worse than the physical issues).

    But as my physical issues are getting worse, I'm losing the respect and even, to some degree, the love of my spouse. Few of the friends I have aren't 'different' to some degree--we all know what it's like to be alienated from the mainstream.

    You see, when Sarah met me, I could and was working, and usually for a pretty decent paycheck. Now my doctor is looking at my pain journal and literally asking me, "What other medications do you want? This is unacceptable." (I'm conservative with my meds, so I just asked for my 50mg Ultram dose to be raised. Now I can take up to 300mg at a time). But working--I've tried to find a job. Hawaii is much less focused on appearance than Maine, I guess. And it really bothers Sarah.

    I've lost standing in her eyes.

    And I'm damned fucking sure I'm not the only one who has had to deal with this.


    Get 10% off with KATALOGUE2012 at my shop, or go to the Kos Katalogue!

    by LoreleiHI on Fri Nov 09, 2012 at 06:43:42 PM PST

Subscribe or Donate to support Daily Kos.

Click here for the mobile view of the site