Why I can’t write a good personal essay

I haven’t gotten a pay check since my fellowship ran out in 2017. Funding is scarce for students in the end of their PhDs and scarcer still for international students with disabilities, so it’s not too surprising that I’ve been turned down for everything I’ve applied for.

Almost 5 years ago, I wrote with regard to applications for funding and otherwise:

Use your story and the survival skills you’ve gained to succeed. I use my escape from rural poverty in personal statements to show that I have incredible drive, creativity, and independence.

But I just can’t do it any more. I can’t make my life a funny, moving, educational story for someone else to judge.

I used to follow my own advice. I turned the ways in which I don’t fit neatly into the world into pat inspiration porn. I talked about disability, adverse childhood experiences, being queer in a culture of religious fundamentalism, childhood poverty, and sexism as obstacles for me to overcome in a story to inspire funders. And I received fellowships that helped me make it through several years of my PhD, a year and a half of unpaid medical leave and many uncovered medical expenses.

But now I’m too tired, too sad, too angry to twist my life into those kinds of narratives. Those things are structural problems reflecting deep prejudices, oppression, & exploitation. I can’t wrap up the things that hurt me the most in a cute package to make someone feel good about giving me money. Funders seem to want to a story where where cleverness and elbow grease lead make light work of disability and other “obstacles.” Ultimately, telling those stories was personally destructive because I kind of came to believe those stories over time. And they aren’t true.

A little smarts and hard work and luck can’t make my chronically ill body “productive.” Even if they did, it would only make it alright for me – and that’s not good or fair. Telling those stories for so long made dealing with the reality of living-with-chronic-illness-under-capitalism/being disabled and past traumas really difficult.

As soon as I decided the problem wasn’t me, but the response of people and systems to me, I stopped getting funding. As Dr. Sara Ahmed says, “when you expose a problem, you pose a problem.”

Chronic migraine isn’t an obstacle for me to overcome. It is an illness that I live with. It hurts, it’s unpredictable, and the symptoms are strange and varied. But most of my difficulties would not exist in a less ableist, racist, sexist, and capitalist society – the poor care, the financial anxiety, the relationship power dynamics.

  • Migraine would have proper research and maybe even treatment – it wouldn’t be ignored, dismissed, and underfunded in large part because it predominantly affects women (and especially poor women).
  • My disease wouldn’t be stigmatized and belittled in popular culture, despite severe migraine being categorized by the WHO in its most severe disability class along with such diseases and conditions as active psychosis, severe depression, quadriplegia, and terminal stage cancer
  • My disease would be less common – I might not even have developed it – if we had the political will to eliminate poverty and abuse and other such negative “social determinants of health.”
  • Properly funded health care would ensure I received proper disease and pain management, saving me time, money, and suffering. I wouldn’t waste hours every week on insurance paperwork and scheduling with doctors, commuting and waiting at appointments, coordinating my medical care and researching treatments. I would have access to specialists for my disease. My medications would be covered along with physiotherapy and massage. I’d have funded access to therapy to deal with pain that cannot be treated.
  • My PhD wouldn’t have such a short time limit on medical leaves. I wouldn’t lose my income when I am too sick to work. The number of hours I’m able to work wouldn’t determine whether or not I’m allowed to participate in science and research.
  • My ability to financially support myself wouldn’t be tied to the number of hours I’m able to work or widgets I’m able to produce.
  • My immigration status wouldn’t be dependent on my relationship status.
  • I wouldn’t be financially dependent on my partner because I could receive disability benefits while in a relationship with someone who had income. Or I would just get paid for working on my PhD.
  • Disability support would be enough to live on instead of less than the median rent and I’d be eligible for it regardless of my work history and immigration status.
  • I wouldn’t have to rely on friends and family when I’m too sick to care for myself, making it impossible or difficult for me to move or travel – I’d receive funding to employ people (or there would be government aid workers) to help me cook and clean and go about my daily activities.

When I stopped writing narratives that recapitulated ideas about “hard work” and gumption and began talking about structural challenges, about integrating dismantling those structures into my work (or at least getting support to deal with them), I stopped getting funding.

And it didn’t just hurt my funding – my relationship with colleagues has suffered as my attitude has shifted. They like to say things like “you’re so brave” or “it’s so great you always have such a positive attitude” – but when it gets inconvenient or slows me down, if I ask for help advocating for accommodations, or get frustrated with the endless structural barriers my university throws up, they disappear or make excuses or defend those barriers. If I let my good-disabled-person facade drop and express anything but unrelenting cheerfulness, they start pushing me towards the door. It’s not everyone of course, but it’s enough, and it’s people with power, so it matters.

Being “successful” in academia when I’ve faced discrimination and structural barriers has meant parroting oppressive beliefs and mythologies, and I can’t do it any more.

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Valuing chronically ill graduate students

nsf_disability_removal

Many states issue “special wage certificates that allow employers to pay disabled workers according to productivity rather than hours worked.” Working under these rules, a disabled person can expect to make less than $4/hour. Some people think paying disabled people less is a good thing, as shown by this response when Maryland ended sub-minimum wages for disabled people:

If a worker is less productive, should they be paid less? This is not an abstract question for me.

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Fixing problems in science (for white men)

Have you seen the Software Sustainability Institute’s petition on Change.org?

We must accept that software is fundamental to research, or we will lose our ability to make groundbreaking discoveries.

The petition advocates for cultural and structural changes in how science treats software and the people who create it. It says that science has a software development problem. It doesn’t say why science has this problem, but several of the points in the petition hint at the problem. Continue reading

Are we really still talking about pseudonyms?

MASKS by flickr user cometstarmoon

MASKS by flickr user cometstarmoon

This summer I was at a conference in my field that had a tweet up. I don’t just tweet as @sarcozona – I also maintain a real-name, professional identity on twitter, and I went to the tweetup under that identity.

The conversation drifted towards the appropriate way to handle tweeting conference talks that go very badly. Someone said something to the effect of “it’s a good thing I don’t tweet under a pseudonym or I’d say some pretty mean stuff.” The group largely agreed that pseudonyms were a protective shield for poor behaviour. Some of them thought that if they were writing under pseudonyms they’d be saying much meaner and snarkier things. Writing under pseudonyms was disparaged and laughed at or considered bad behaviour by some of the people there. No one defended pseudonyms. Continue reading

Dealing with sexism from unexpected sources

A while ago, one of our readers asked us to write a bit about dealing with sexism from unexpected sources. I’m going to discuss two sources of sexism I found unexpected in my own life, imposter syndrome and sexism from other women. This is a topic that would benefit greatly from your stories, so please add your own in the comments.

I’m currently reading The Hidden Brain, which is about how much of what we do isn’t as nicely thought out as we’d like it to be. The author includes a particularly nice metaphor that describes how privilege works (excerpted by Maria Popova over at Brain Pickings). The author, an average swimmer, is having a lovely swim in the ocean and is feeling great. He pushes out further and further, but when he turns to go back, he realizes he’s been riding a current and now has to struggle for every inch to return. On the swim out, he was congratulating himself on his improved technique, enjoying his prowess. He never stopped to consider the external circumstances that might be affecting him.

Most of us — men and women — will never consciously experience the undercurrent of sexism that runs through our world. Those who travel with the current will always feel they are good swimmers; those who swim against the current may never realize they are better swimmers than they imagine.

The most unexpected source of sexism in my own life has been imposter syndrome. Continue reading

How to do a medical leave

I’m three-quarters of the way through medical leave. I’m going back to work soon and I feel ready, even though my health still isn’t perfect. I was anxious about going on leave and determined to make the most of it. Going on medical leave isn’t about going on a four-month vacation; it’s about getting better and learning to work around your illness (if it’s chronic) – and that takes work. Here’s my guide to making medical leave a success.

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Knowing when to stop

Whenever I brought up the possibility of dropping to half-time, my advisor shrugged and said something like “you’re still moving forward” or “you’re doing ok.”

But I wasn’t doing ok. I was too sick to work most days and my progress could only generously be called incremental. It was by no means satisfactory. As my program deadlines loomed, I became more and more concerned, but friends, colleagues, and my advisor just tried to be encouraging.

My advisor and committee wanted to know what they could do to help, but I couldn’t think of anything more they could do for me. So I went to my university’s disability services, explained the situation, and asked what kind of accommodations they could offer me. With little preamble, the disability advisor told to take a medical leave. Continue reading