Thursday, March 4, 2010

Do You Work?

I had to go to a new doctor for something I thought was clearly unrelated to my disability, but of course it came up; I was pissy. The doctor, however, persisted; legitimately, as it turns out. These new symptoms could, for him and for an obscure part of a medical textbook, clearly be part of all the other junk. I relented and felt bad about my attitude.

But then he asked if I worked.

Whether or not one is employed is a standard part of the social profile that new doctors seem to want to know -- particularly in my case, since I don't have a clear single diagnosis. "Work" for a doctor seems to serve as a bright line between genuinely disabled and neurotic, psychosomatizer. For far too many within the medical system, work serves as a talisman between a healthy coper and a drag on the medical and welfare systems.

Again, I find myself turning to Sunny Taylor's essay in the Monthly Review. Here's the first paragraph:
I have a confession to make: I do not work. I am on SSI.1 I have very little work value (if any), and I am a drain on our country’s welfare system. I have another confession to make: I do not think this is wrong, and to be honest, I am very happy not working. Instead I spend the majority of my time doing the activity I find the most rewarding and valuable, painting.
Truly. It's now so common to conflate employment and identity at a variety of class and education levels, so common that employment itself has become a marker of social worth. And in this particular economy, employment numbers (never the people, just the fear of the numbers) have become political talismans that the two parties sling at each other in order to try and maintain the illusion that they have a stranglehold on power.

Employment is such a controlling social and moral force. Work discourse frames the discussion of how, when, and even if women have children, their value as working parents, and how they might live/work afterwards. Work discourse controls who, some wild popular imaginations, is a productive citizen and who a "welfare queen." In accident reviews and, for example, in the post-911 insurance discussions, work discourse can help assign a monetary value to some lives..... You get the picture.

And if you are a disabled person trying to work, trying to get a job, trying to retain a job, you know how difficult things can be.

For a medical professional to use work as a shorthand for disability legitimacy and personal credibility seems to fully miss the point. My answer complicates the question even further. Yes, I have a job. Some weeks, I can work up to 30 hours; some weeks I work only 3-4. But I most definitely work. And then, there's all the preparatory stuff I do to keep my body in shape and all the recovery stuff I do to undo the strain of dance. I don't think of it as "work" but a fair amount of labour is definitely involved.

"Yes," I say, "I work as a dancer for a physically integrated dance company." I then have to explain what that is and what I do. Oh, yes. The situation is complicated -- my disability is my job. What does the system do with that? I am obviously capable of focusing on something other than my own dramas and of contributing useful work to the world. Yet at the same time, it could also be that I have managed to expand my neurosis to such an extent that it defines my world -- and I get paid for it.

There's a pause. We look each other in the eye. It's a smackdown in all the usual critical ways -- white man to black woman. Non-disabled to Disabled. There's a long pause.

"In your case,....." he says, deciding to go for it. He lists some of the interactions between conditions, some interesting studies, and some treatment/followup options.

I smile, thank him, shake his hand, and leave. The sensation of having just narrowly jumped some invisible hoop pervades me. Work for better or worse, work defines who you are. What if I had been unable to work? Would he have denied me care? Been less thorough in his discussion? Or could he have been even more thorough? Were there options he forebore from mentioning because he didn't fully believe?

Work. I have rehearsal today. It's not work. It's how I live and yes, it's who I am.


  1. Awesome post. The question of social control through the discourse of work, and how doctors are buying in to that (maybe even more than the rest of society), is a huge one.

    I admit to saying that I work when I actually live on benefit. I'm a freelance researcher and am training to be a trainer, so I have things to say when the 'Do you work?' question rears its ugly head. I side-step the issue of not getting paid for any of this work. That's because I believe that what our society values as 'work' is a far too narrow set of activities. Same goes for the new buzz-phrase 'economically active'. Too many disabled people are economically inactive, the government says. But I went shopping this morning...

  2. I'm glad that you get paid for what you love to do, but is it enough to sustain a comfortable life?

    There is a growing movement, at least where I live, in social service organizations that provide resources to help people with disabilities find employment and to help them make their workplaces accessible.

    I've used these services before and was appalled that they only offered me positions in low-skill, low-pay, menial work. There are also businesses that will hire people with disabilities and put them on "special projects" that really don't have any productive role in the company, regardless of the skills of the person who has the disability. This obviously isn't true integration of people with disabilities and it is a slap in the face to their skills.

    Instead of demeaning people who are a "drain on the system," I think these doctors, or whoever, need to evaluate the social barriers that necessitate welfare or prevent people from getting jobs -- or jobs that fulfill them and pay them well. Yes, a person may have a disability, but I think a lot of people are able to contribute something to society. Why not give these people the resources to do that?

    If they can only work part-time, perhaps the government should look at supplementing their pay; if they require assistance or accommodation at work, give it to them; allow them to work at home.

    Of course there are people who simply cannot work and the government should do more to help them. Poverty shouldn't exist. What complicates the situation, I think, is that there are often competing opinions about whether or not someone can work. These opinions are often driven by money and bias.

    I agree that people are often defined or define themselves by what they do for a living.

  3. This is an excellent post and very thought provoking. The truth of the matter seems to me whether or not most disabled people I know could manage to work 'full time' on a week in week out basis. Any disability that causes pain or is variable in any way will mean that some weeks you can work 30 hours and sometimes just 3. In fact those 30 hour weeks probably mean a knock on where only 3 would be possible the week after - the remainder being recovery time...
    How do you sell this to any employer? Would you employ someone on that basis? It seems that benefits are really the only option unless you are one of the lucky ones who can be self employed but earn enough out of flexible hours to live. Hmm, this may escape at some point into a blog entry of my own ;-)

  4. Some interesting comments on yet another thought-provocking piece. This is an issue I continue to deal with despite skill and training, and one I continually confront at the hands of others who apparently judge me as a human being based upon their own biases.

  5. Wow. just ... wow. I think my age is showing. I grew up in an era in which a lot of women "didn't work" though many were active in the community in many ways ("volunteer work") or had "hobbies" that were taken at least semi-seriously. I knew, of course, that that has changed but I hadn't thought about the intersection of that change with the growth of disability movements. I mean, 40 years ago, women who "worked" were the ones who were neurotically unhappy with their ordained place as homemakers. (Or else they had no-good husbands, or had been widowed by men who hadn't provided well enough for such an eventuality.) Maybe it's the mental health evaluation that needs to go, when the ground can shift so fast in a generation or two.

  6. I have a friend who, when asked if she works, asks back, "Do you mean, for a paycheck? Because EVERYBODY has work that they do in this world. Not everyone gets paid for that work."

  7. Excellent post. I've been doing the rounds of new doctors (for my daughter) and when they find out about my disabilities they always ask, "Do you work?" It never really clicked why they would ask that so consistently. I suspect they think that my "poor" daughter is saddled with a "useless" mom, and that may explain her mystery ailment. Sheesh. Now my mind is open. Thank you.