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.