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 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.

Advertisements

47 thoughts on “Why I can’t write a good personal essay

  1. I absolutely love this post. I’m sorry about your illness but I understand exactly what you mean. And that’s exactly the reason I’ve decided to leave Science (research in particular). I’ve no personal issues but I hate asking for money from people and I find it appalling that because of my country of origin, unless I am very diplomatic, my research won’t be taken seriously. Honestly, I don’t even regret it.

    • I am sorry research was not a more welcoming place for you and that we will not have a lifetime of scientific contributions from you. But I hope you can enjoy the heck out of the end of your current work and find something that appreciates you more.

  2. Pingback: Why I can’t write a good personal essay | Tenure, She Wrote |

  3. Thank you for this (and I’m happy to see you blogging here again!). Just finished a PhD in ecology with lupus. It was hard and even when I told people, they didn’t really understand what my challenges were. Luckily I found a job post-degree that gives me great health benefits, paid time off, and a supervisor very dedicated to a work-life balance. I know this is not the case for everyone by any means (even able-bodied people get overworked past the point of reason!). I wish it was different.

    • Congratulations on finishing your PhD! I am so glad you have moved into a good job.

      I wish it were different too. I think disability is a little like climate change – there are incremental things we can do to make it better, but actually fixing it requires big structural changes that are hard to imagine. So hard to imagine that I don’t even have the right language – saying disability makes it sound like I’m talking about changing disabled bodies when what I really mean is restructuring our society and economy so that people are not disabled by our society and economy.

  4. This is a great article. It’s really hard when you’re chronically ill. And I think many people forget that just because you can’t physically see the issue doesn’t mean it doesn’t exist. This was a really interesting read.

  5. Congrats for achieving PhD but it’s a pity that society is adamant to appreciate and recognise abled differently is a different strength.
    Respect to substance between our ears is called for. It’s very uncomfortable begging for funds using stories that end up lowering self esteem.

  6. Perhaps you cannot or will not write a “good” personal essay (“good” defined as resulting in academic funding), but I bet you could write GREAT memoir, poems, nonfiction (“GREAT” on literary merits). This article has such energy, force, and honesty.

    It can be challenging to find publishers for articles about trauma/frustration/anger/political grievances that don’t end on an inspirational note. However, it is possible. They are out there.

  7. I know this problem well, despite being neither an academic nor a person with a disability. It (the habit of presenting a problem in a slick way and putting the onus for a cure on individuals) permeates society. We try so hard to manage and improve the cards we’re dealt, but there’s a limit, and integrity is under threat. Thank you for your clarity.

  8. I have an understanding of how demoralising, dispiriting, and exhausting it is to always have to ask for help, instead of it just being there to easily access, or be offered. My story isn’t the same as yours, but I was in the position of looking after my elderly parents for eight years, and always had to ask members of my family for help. None of them, bar one, thought to act pro-actively in a consistent way. It gave me a good perspective on why those who need help often just stop asking for it. Constantly having to ask for help is soul-destroying, and going through the rigmarole each time gets exhausting, and does one’s head in. It’s a Catch22 situation – if we look as though we’re coping, it looks as though we don’t need help; if we fall apart, few want to be caught up in the fallout of that.

    • ” why those who need help often just stop asking for it. Constantly having to ask for help is soul-destroying, and going through the rigmarole each time gets exhausting, and does one’s head in.” You’re so right. Ideally, we’d design our social and economic systems so that people didn’t get put in these positions so much – the equivalent of building ramps and elevators instead of stairs so people who use wheelchairs can get around without trouble.

  9. This is a really motivating and brutal look at modern academics. It’s hard when you’re atypical. I’ve watched those close to me struggle with similar stigma, and while I have been blessed not to endure such tragedy, I’m sorry that you have, and I’m glad you’re speaking up about it!

  10. Kudos to you for making it to PhD. I have refractory or intractable migraines and fibromyalgia. The two of them together kick my behind. I’m 2 papers short in my current classes, and have had this migraine for 5 days now. All I can say to you is that on a small level I understand. Certainly not all of it but I do wish you well.

  11. I don’t know if this will help you in your field at your educational level (much higher than mine – I just barely managed a bachelor’s degree) but here’s how I made a way for myself despite horrific migraines and related depression that started when I was 6 years old and lasted until well into my 50s when my doctor came across a treatment that finally freed me from the migraines and I got on medication that didn’t end my depression but at least took the edge off so I could keep going.

    By the time I graduated I knew I wouldn’t do well in a typical work environment where I was tied to fixed hours, days, and schedules. I found a low-level, relatively undemanding job just to pay the bills and was looking for the next step forward. One day, a salesman from a supplier came in on his usual sales call. He told me he had to quit his job and asked if I knew anyone who wanted it. The sales job was not what I had envisioned and only distantly related to my degree but it was in an area that coincided with one of my personal interests, and since it was a commission job I would be able to set my own schedule with a lot of flexibility as long as I covered my territory. I thought, either I can do the job or I can’t. What do I have to lose by trying? As soon as he was out the door I called the company. Within a few days I was hired. I never told them about the migraines.

    It turned out better than I could have expected. Not only did it give me the flexibility to work around my migraines, it turned out to be something I enjoyed enough that I could make myself go out and do it even during some times when I felt like death warmed over. Even better, I found ways to do the job that made it more efficient and less demanding. That enabled me to cover my territory while working around my migraines and be one of the company’s higher producers in spite of everything. I worked at a series of such jobs over the years, eventually working into e-commerce, and ended with a few years of running my own small business. I did not get rich or get the kind of career my degree was aimed at, but I made enough money to support my family, buy a house, raise our kids, and live well enough, at least by my standards, and I often derived real satisfaction from my work. I never made the kind of money I would have made if I could have taken full advantage of my college degree, but I am now 70 years old and comfortably retired.

    So, if health issues and the circumstances surrounding them keep you from doing what you have educated yourself for and placed your hopes on, you can do a lot worse than finding something you CAN do – where the demands are less, the structure is more accommodating, or the barriers are lower, even if you are way overqualified – and making of it everything your situation will allow. You might be amazed at what you can accomplish and the kind of life you can make for yourself. Just find a place to start – any place – and go where the opportunities take you.

    And I sincerely hope you find the relief and wellness you need along the way, just as I did.

    VLH

  12. Love how this post links our capitalist systems ability to contort actual disabilities into obstacles to be simply “worked hard” out of. I have the same issue. I had a learning disability and as a result was denied to almost every university I applied to, until I wrote a personal narrative about how I overcame that to get perfect grades senior year of high school. It sucks. It’s something that must change.

  13. “it’s getting hard to be someone, but it all works out..it doesn’t matter much to me..”, doesn’t work always after all. Brilliantly written, expressed the truth the best you could.

  14. This is how I feel now. Im from a underdeveloped country, I’m black, I’m a women, I’m poor, I’m queer. The list is long and company’s love it. However, it seems like now a days that’s all that I am. I cant get anything without exclaiming to the world that I want to better my country. That’s not true. However, it’s the path people expect me to take and I’m over it. There has to be a better way to receive funding without plastering our trauma on papers for people who honestly could care less 🙂

  15. I’ve been thinking a bit along these lines as well, recently. Chekov said that writing can describe a problem but doesn’t (or shouldn’t) try to solve it. Someone else I was listening to recently said that right now people don’t need answers – we are saturated with answers, most of them bullshit – we need to raise the right questions. But as you say, our techno-capitalist society wants us to package things up as part of an optimistic consumer narrative – work, consume, be happy. To try to entirely conform our writing or our intellectual pursuits into consumable, bite-sized memes simply isn’t truthful or faithful to what motivates us to write and think with purpose and creativity.

  16. It’s difficult to talk about strength when not feeling it all the time in the same way at all. For sure, trying to meet someone else’s bar instead of one’s own, is a pain in the butt. Some of us….do it to earn money. There’s no other justification but as long as the job is honourable, that’s good enough.

  17. I understand exactly what you are saying. I get the same thing, not from a physical illness but as a survivor of domestic violence. We don’t want pity from others, we want change.

  18. Im sorry for ur illness…i absolutely love this post a lot…this days all of our countries has become a place for famous people…they would not care much for people who has ability…THEY APPRECIATE RICH AND FAMOUS PEOPLE WHILE THEY DONT CARE ABOUT THOSE WHO HAS TALENT

  19. Thank you for saying this, and congratulations on your PhD. I only recently graduated with a Bachelor’s, but I experienced discrimination against my disabilities in the classroom almost daily from both students and faculty, from more obvious things like refusing accommodations and saying that I didn’t deserve to be in the writing world because I needed them (the accommodations), to smaller, what some would call “micro-aggressions”. Though I don’t know how to begin to change Academia as a whole, some part of me knows that it must. Not everyone is motivated by spite, and I don’t want to see my fellow students fall because certain teachers and students can’t understand that disabled people actually -gasp- exist.

    Truth be told, a lot of them simply weren’t there to learn, they were only there to confirm their own biases, so reaching them was near impossible unless I wanted to tie up my struggles with a little bow and hand them some chocolate frosting as a peace offering. Several times my professors told me that I wasn’t really allowed to be angry in my writing because audiences didn’t like it. To be honest, I hope every piece I wrote in those classes made people uncomfortable with themselves. Maybe then they’d actually get to think. Realizing there is a problem is the first step towards a solution. Now if only I could shove them down that road, then maybe I wouldn’t feel like such a screw-up for having an emotional stake in my own life and abilities.

  20. Thank you for sharing this. I’m grateful to whatever force in the universe led me to it. I’m in a Master’s program with a woman who has CP. She and I started in the same semester, have taken a few classes together and keep in touch. I consider her a friend, and I try to be an encouragement to her. When she has shared with me about difficulties she faces, I want to find a way to help, not just because it’s her and she’s my friend, but because she is busting her ass and anything that makes it more difficult for her or other students who have disabilities is garbage. I have found that when she expresses anger and frustration, I don’t want to “push her out the door,” I want to figure out what I can do to be more helpful, supportive and inclusive. I feel like I’m just fumbling around most of the time and need to find an appropriate way to ask her what I can do, if anything. She has so much to offer, and I worry about her leaving the program because of the unique obstacles she faces, in addition to the obstacles of trudging through a graduate program.

    • I really appreciate when people advocate not for me specifically, but for students with disabilities generally. One really great thing to do is to make sure that any event you organize has an access statement and encourage your department and university to make it policy to include access statements with ALL event announcements.

  21. I have many friends who came to this country when they were younger. They grew up in the culture, they speak the language, all their friends are here. They were great students and went to colleges but had the constant reminder that they were not considered the same each time they had to fill any application. They hated having to hit the buttons to show they are from somewhere else when this country is the only thing they know. One friend went on to become a doctor and I think she would like this article very much.

    I’m sorry to hear about your difficulties. I do believe change is in progress but unfortunately change is very slow in the world of politics. Especially in academia.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s