My birth was a truly awful and terrifying day for my Mother. Like most people with cerebral palsy, my birthday went badly for all involved (the usual cause of neurological damage is lack of oxygen).
Of course we can flip it and say that it was successful because I survived and eventually thrived.
My gait has never been normal. That means that I not only failed gym as a child but I am also a survivor of social abuse. My parents did the best they could, pretending that there was nothing wrong. (which set me up for an accounting when I grew up).
The arc of my life physically has been marked by the fact that while cerebral palsy itself is not progressive, the distortions it introduces into the body become a progressive THING. The THING has a name … it’s been codified as “Post Impairment Syndrome” — FATIGUE, joint problems, and ongoing problem solving by the medical establishment, which explains why at 25, I was able to wear white heels with my wedding dress … but should my daughter marry, I will wear one of the two pairs of shoes that I own that my brace fits into.
But I am getting ahead of myself.
One of the greatest blessings of my life is the love of my life. I don’t think it’s an accident that I fell for a man who is from the disabled community. T grew up in the sixties when they were still wrestling with what to do with dyslexia. Something about that experience gave him the ability to look at me and see a woman, a lover, and a life companion. Likewise, I knew enough about dyslexia to look at him and see a brilliant man, a lover and a life companion. This year it’s 27 years and we are still going strong. We have a curious partnership. He steps in when something is needed that I struggle with, and I am in charge of forms.
There are really two love stories here. While I was in college I had a work study job in the College Library. It did very well, and rose to a responsible position. One of my first jobs after college was working for a library publisher. Contacts I made there suggested I consider “library school.” In the late 80s I left New York City with my beloved, heading for graduate school for him at Syracuse University. While we were there I started to take library school classes and I discovered my vocation. Once he was done at Syracuse we hit the road again and arrived in suburban NJ, he found a job as consultant and I threw myself into finishing my MLS.
While I was doing my MLS, I worked at a reference assistant at Alexander Library. I loved it! I have been working public service in academic libraries ever since. The problem was that I lacked the traditional qualification for an academic librarian in a tenured position. I lacked my second degree.
One more benchmark. Parenthood arrived in the summer of 1995, 9 months and 2 weeks after I finished my first graduate degree. C is probably the most “normal” member of the family. Her gross motor skills are certainly hugely better than mom’s, and she can read just fine. She grew up to be a creative writer and a slam poet. When she applied for college, she apparently wrote about being the normal child of a parent with disabilities. (I have not read the essay.) She is an extraordinary young woman, and we are very proud of her.
So what does being a working professional, a mom, and person with disabilities look like?
The decision to stop at one. It’s complicated, but a big piece of it is that at the moment when many of our nursery school cohort were doing #2, I understood several things. The THING had begun to assert itself, and I began to understand that it was going to get harder. Plus, I really wanted to go back to work, and I didn’t feel comfortable with putting a baby in daycare.
I returned to work part time just before C’s 4th birthday. In 2003 that morphed into my first full time position as User Education Librarian for Raritan Valley Community College.That was a temporary position, and when I did not receive the permanent hire I was encouraged to go back to school. What followed was a series of temporary appointments, while I slogged my way through my MA.
When I walk out of the World Trade Center Path Station it takes me longer to make my way up Greenwich Street than it does for “normal people.” I know this because I am the rock in the stream, most of the people end up going around me. Let’s just face it, whatever it is, it just takes me longer.
It takes longer, but I will get there. I did my MA 1 course at a time. This was partly a financial decision, but it was mostly about managing my energy level. I fell in love with academic librarianship in 1993. In 2009 I graduated with a MA in World History with a minor in History of Technology. I graduated in May and in August I started my first full time tenure track position here at BMCC.
I am also very, very fortunate to have support whenever I need it. At one point I considered pasting a cut out of my husband’s foot on my graduation gown, in the approximate area of my backside. I would not have graduated either time without tons of encouragement and support from T.
I also believe very deeply in suiting up and showing up. I believe that this is very common in the disabled community. I am deeply committed to what I do, and I am very grateful for the opportunity to work my craft.