Even in the most complicated circumstances – as a single mother, or recovering from cancer, or dealing with the death of my beloved grandmother, or all of those at once – I’ve always been able to work at full capacity. In fact, work has often been my only solace.
Last night I was talking to my daughter about the differences between her alternative school and the traditional school I went to at the same age. She was dismayed by some of the facts about the institutional structure, and as we talked I remembered being thirteen again. I remembered having dozens of cancerous lesions gouged from my torso during morning appointments and being dropped off for afternoon classes, the fresh wounds covered by itchy turtlenecks.
If the surgeries required hospitalization I went back to school immediately, sometimes with the hospital bracelet still on my wrist. I read textbooks straight through, not because they were interesting but because I had to work twice as hard as any of my peers in order to keep up.
The disease was too fantastic to believe and some of the teachers took a malicious delight in labeling me a troublemaker, a hypochondriac. Class placement, grade point averages, missing tests that I was not allowed to take — by age thirteen I was my own legal advocate, quoting federal laws at recalcitrant school staff.
If anyone had been kind to me I might have been a happier person, but the experience of institutional discrimination forced me to work hard and to become a political creature. I learned how to play by the rules, and how to force everyone else to play fairly.
I took on all the judgment, and demonstrated that a kid with a disability can in fact be a good student. I repudiated the charge of liar by devoting my life to righteous causes. I met every challenge with cold precision, never missing a deadline, never giving anyone a chance to see me as vulnerable.
One example: during my first year of graduate school I was a single parent and commuted over a hundred miles a day to get to campus. My health insurance was about to disappear, and I had to get my final set of radioactive isotope scans. This involves an oppressive regimen of going off the medication that keeps me alive.
I couldn’t take time off school because I would have forfeited my scholarship and work study job. By the time the tests happened I was only marginally competent, barely able to drive, too tired to stay awake. But I did in fact go to every single class and turn in every single assignment. I am not bragging when I say that I committed more time, and turned in better work, than half of my peers.
The week of the scans I had to fast and at that point I went to my seminar leader and asked for an extension on the final paper.
He said no.
He said that I was taking advantage.
He said that his brother died of cancer and it was morally repugnant of me to claim cancer as an excuse for not doing work.
He said that if I couldn’t do the work I should leave the program.
I looked him in the eye and said You are violating my civil rights and you will in fact accommodate my request.
Then I walked out of his office and, within days, started the next phase of my life in campus governance. I started on an advisory committee but within months I was writing official school policy, pushing hard to make the institution one of the first in the nation to truly meet the new legal standards set by the Americans with Disabilities Act.
I finished the graduate degree on time, and was one of only two people allowed to do independent thesis research. Before I turned in the final paper I had a full-time job working in the state capitol, and offers from DC.
This is merely one example from an entire lifetime of fighting. But after relentless hard work and deliberate, direct action — I don’t have anything much to struggle against. I am safe. I am surrounded by people who deserve my respect. The trouble now is that work is so closely associated with struggle that I can’t separate the two.
I feel like I’m dropping off a precipice if I can’t make a deadline, even when there are pragmatic and reasonable obstacles in my path.
I feel queasy if I’m ten minutes late to an appointment.
I never set aside time for recreation or pleasure. I feel guilty about my love of celebrity gossip magazines and reruns of Bewitched. Even the books I read are part of whatever project I’m working on instead of something strictly enjoyable.
It is an alarming experience to give myself the slack I should have always had. I’m not sure that I like it, but I am also not the kind of person who creates drama to replicate the past.
It was not fun to work that hard. I don’t know how to have fun, but I think I should learn how to be calm.
I’m strangely, for the first time ever, free. But I am distinctly uneasy with this liberty.