FeminismPersonal Stories

Who I Was Before I Became Disabled

If you’ve read my disability story, you know that I wasn’t always as sick as I am now. It was a gradual process at first that sped up around the time when I had surgery. Since I grew up in Wisconsin, went to college in Iowa, and then moved to Ohio for a job three years ago, most of my friends are people I’ve only known for a couple years. Since moving here correlated with me getting sicker, most of my friends don’t know the pre-disabled Sarah. And while they accept my limitations, it’s a lot harder for me to accept those limitations, because I remember who I used to be.

The author and her family at her high school graduation

With my family at my high school graduation.

I had a perfect GPA pretty much until college. Not only that, but for as long as I can remember, teachers always told me they graded me harder than my peers, because they knew I was more advanced than most of them. Then when I got to high school, I was in advanced classes from the start. I remember that since I went to a private Catholic school, they didn’t want to put me in accelerated classes my freshman year because they didn’t think the curriculum at my Catholic school was “up to standards.” I argued that was untrue, and they offered me the opportunity to take placement tests before high school began to determine if I could start with advanced classes. I passed all of them, and thus started high school with accelerated classes. As soon as I was able to take Advanced Placement classes (classes that are considered college-level, and at the end of the year you take a test that determines how much college credit you get for the class), I did. By senior year, all of my classes were Advanced Placement, and one of them was 2 hours long (instead of the typical 1 hour long classes), so I had to show up to school an hour before everyone else. Up until senior year, my GPA was 4.3 (on a 4.0 scale, which is only possible by getting perfect grades in AP classes).

But just being good at school wasn’t enough. No one in my family had gone to college before, and I knew I wouldn’t be able to afford it on my own, so I knew I had to go above and beyond to get scholarships. So I signed up for almost every non-sports extra-curricular I could. My freshman year, I was the one of the only freshman picked for a role in the spring play. The director pulled me off to the side and said I was the first freshman she had picked in years, because she could tell I was mature and would work hard. I was also in the A/V club (yeah, I’m that cool), the National Honor Society, the Foreign Language Club, the Conservation Club, and I was the stage manager for the fall musicals since I have absolutely no singing talent. I’m sure there were a few other clubs that I can’t remember. In several of these clubs, I was an officer as well. During my senior year, I petitioned the principal to let me start up a school newspaper (which I thought would be an easy thing to do, but turns out there were a lot of hoops to jump through). I was eventually voted “most involved” my senior year.

The author holding her hand out to a wolf, who is sniffing it through a chain link fence.

Me with Tonka

Was this enough for me? Not quite. At age 13, I had started volunteering at my church. I was already an alter girl, but a friend and I started volunteering to be lectors on weekends because we had such good public speaking skills. As I started to disagree with the Catholic Church’s teachings, I stopped volunteering. During freshman year of high school, I went on a field trip with the Conservation Club to a wolf preserve, and as a lifelong animal lover, I asked to start volunteering. Normally, the requirement was that volunteers had to be 16, but again, the president of the preserve said she could tell I was mature and hard-working, so she let me start early. I spent 5-10 hours there every weekend in high school, and then during summers in college. (The president of the preserve and I would later joke that most volunteers burn out after a couple months, but the youngest person she let start volunteering on their own ended up being one of the longest-lasting volunteers.) My junior year, one of my favorite teachers was diagnosed with cancer. So I signed up to help run the local Relay for Life. Since they were so short on volunteers, I ended up running both the publicity and entertainment for the Relay (which included a lot of work before the walk, as well as being the Emcee for the 12 hour event). I volunteered again my senior year, after my teacher passed away. I can’t remember how much we raised either year, but I know it was in the tens of thousands of dollars. On top of this, I also worked part time at a grocery store for most of high school.

Throughout high school, my friends used to joke that I had a resume that would “kill an elephant” if I dropped it on them. Not only that, but in senior year, when my Spanish teacher told us they didn’t have enough books for everyone, so we weren’t allowed to take them home to use for studying (which, you know, makes it kind of hard to learn), I went up against the Superintendent and used my “cred” as one of the top students in the school to demand that they get more books for the Spanish department so we could study properly. I was pretty sassy in my email, and apparently the Superintendent tried to undermine my efforts by asking all of my teachers what kind of student I was and if I got into trouble (I only learned this when several of my teachers came up to me before class and informed me that they had been called into a meeting with the Superintendent to talk only about me). When all of them gave glowing reviews about me, the Super Nintendo relented and got us new books (my Spanish teacher baked me something as a thank you, because her attempts to get us new books failed repeatedly).

This is already longer than I anticipated, and I’m not giving all of these details to brag. I just want to paint a clear picture of the Sarah that *I* know and remember. In high school, I slept 3-4 hours a night because I was so busy. Now, I sleep 10-12 hours a night because being sick is exhausting. I consider it a big day if I can shower and leave the house for a couple hours. There’s no way I could do even half the things I did in high school anymore. I think if 16 year old Sarah met 25 year old Sarah, she’d be ashamed. I remember when people made fun of me in high school, I always used to tell myself, “In 10 years, I’ll be successful and living a great life, and they’ll be losers who live in our shitty hometown and never challenge themselves or do new things, because they peaked in high school.” And since I got sick, I’ve felt like a failure and that I peaked in high school. I’m never going to be able to be president of several clubs while going to school while working while volunteering again. It’s hard not to feel like a failure.

Five people, including the author, sitting in a circle holding up FeMMe Fest shirts.

Me with the other FeMMeFest organizers

But lately, I’ve been thinking more about it. My definition of success has changed. Part of this is my anti-capitalist praxis, part of it is maturation, and part of it is being very sick and learning what’s really important. I used to think having a successful career was the most important thing. I mean, I wasn’t a Wall Street powerhouse or anything, I just wanted to work a job where I could make a real difference in the world. But I’ve learned that’s not the only way to make a difference. I mean, I’m too disabled to walk more than a few blocks, but I’m still a Skepchick, I run a sister site for people with disabilities, I’m a vegan (which means my daily food choices are a form of activism), and just a few weeks ago, I was one of the main organizers for a music festival that raised over $9,000 for a local anti-rape non-profit. I have a lot of great friends who accept me as I am, as well as an incredibly caring and supportive partner (that’s a link to the story of how I proposed to him, which my obviously unbiased opinion is that it’s worth reading). I also lived in another country for half a year, and now I live in a city that’s not my hometown (that I wanted to get out of for my whole life).

So maybe I can’t do everything that I used to be able to do. But I can still do things that make a difference, and I still have people who love me. I’m still an activist, even if I can’t spend 60 hours a week on activism anymore. So maybe 16 year old me would be proud if she knew what I was doing today. And even if she’s wouldn’t be, I am, and that’s all that matters.

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Sarah

Sarah

Sarah is a feminist, atheist vegan with Crohn’s Disease, and she won’t shut up about any of those things. You really need to follow her on Twitter (and probably Google+, just to be safe).

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