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.