Why I can’t write a good personal essay

Written by Sarcozona

We have kindly been given permission to reproduce this from Tenure, She Wrote where you can find the original post.

I haven’t gotten a paycheck 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 anymore. 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 a story 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 anymore.

About the Author

Sarcozona is a graduate student doing research somewhere between ecology and evolution. Their blog chronicles their experiences being sick and queer in academia with lots of asides about the plants, shoes, and books they love. you might also want to follow them on twitter or read their posts on Tenure, She Wrote.

Ten Ways to Make Conferences Accessible to People with Disabilities

Written by Debra Guckenheimer 

Debra kindly gave us permission to re-post this article from medium.com.  The original can be found here:

ten-ways-to-making-conferences-more-accessible-to-people-with-disabilities

Attending workshops, lectures, symposium, conferences, and other events are difficult or even impossible for some people with disabilities. Rarely have I seen disability given much thought in conference planning, even when the topic is diversity and inclusion.

Here are ten ways to making your conferences more inclusive of people with disabilities. Many of them cost little to nothing other than a little forethought.

1. Accommodation Point Person:

   Assign a person to be responsible for providing accommodations when needed. This person ideally should have some training in disability inclusion and encouraged to think creatively about how to accommodate potential attendees and speakers. Publish a phone number available during the event so that someone is available to address issues as they arise.

2. Advertising and Publicity:

   Include a statement about your desire to be inclusive of people with disabilities. Provide contact information for your accommodation point person as well as information about all accommodations you have arranged. All photographs in publicity should include a caption describing the picture for the blind and visually impaired who use screen readers.

3. Interpreters:

   Provide an option of a deaf interpreter. If you have the funds, hire the interpreter for all events or at least the larger sessions. Having the interpreter allows for attendees to not have to make the request in advance as well as demonstrates your commitment to inclusion. If funds are tight, offer to provide an interpreter upon request.

4. Ushers:

   For the blind and visually impaired as well as for people with difficulty carrying materials around with them, have someone available to escort people around large conference spaces. If your event requires walking across long distances, have wheelchairs available for escorts to transport participants who need help getting across the space.

5. Parking:

   Does your space provide adequate parking spots for people with disabilities? If lack of parking is an issue, consider providing extra reserved spots for those with disabilities. Consider how people with wheelchairs as well as those without but who have limited mobility can maneuver the space. If a separate entrance is needed for those who cannot climb stairs, make sure the entrance is not locked. Allow people to independently be able to enter your venue. If it isn’t self-explanatory, have clear instructions for where ramps and reserved parking for those with disabilities are located.

6. Location and Set-Up:

   Be sure your venue is wheelchair accessible — both entrance and bathrooms. When planning the set-up of your room, ensure that isles are wide enough for wheelchairs. Leave space at the side and back of rooms so that people who need to stand can do so.

7. Inclusion Supplies and Supports:

   Want to go above and beyond? Provide a separate space where attendees can comfortably relax, especially for longer events and conferences. Have more comfortable chairs and foot stools in these spaces. Ensure space for attendees to stretch there if needed. Inside your event, provide back supports, cushions, and/or portable foot stools so that attendees can make the seating fit their bodies.

8. Food Allergies and Intolerances:

   If you are serving food at your event, consider taking a few steps to allow participants to keep themselves safe. Keep common allergens out of your menu, and announce menus ahead of time including if the menu is free of these. Keep your event space peanut/tree nut free since those allergies often respond to any exposure. Label foods being served (or if using wait staff, have them informed) including if they contain and/or are free of common allergens. If you are aware of an attendee having an allergy, do what you can to accommodate. Providing an alternative food is more inclusive than asking an attendee to bring their own.

9. Audio/Video Streaming and Conferencing:

   Being physically present is just not possible for all people. If you take advantage of one of the many technologies available to audio/video streaming or conferencing. At the most basic, you can allow people to hear and see speakers. With more investment, you can allow speakers to present and participations to ask questions without being in attendance.

10. Social Media Participation:

    With social media, we can rethink what participation looks like. Create a hashtag for your event so that participants can use it to follow each other’s posts. Create a Storify page to track postings and create a permanent website with tweets and streaming. Provide a listing of all speakers and participants that include social media used to encourage participants to connect. Virtual Connecting is an organization is rethinking academic conference participation. They have ideas about how to connect people physically present as well as those participating online.
Don’t stop with my ten tips. The best way to be inclusive of people with disabilities is to engage in conversation. Ask people with disabilities that you want to participate at your conference what they need. Be open and creative. Making your conferences and other events more inclusive for people with disabilities will also make them more inclusive for all people.

About the Author

Photo of the author

Debra Guckenheimer is a Research Associate at the Clayman Institute for Gender Research at Stanford University. Previously, she was a Research Associate at the Hadassah Brandeis Institute at Brandeis University, a Visiting Assistant Professor at Bowdoin College, and a Postdoctoral Research Associate with the NSF ADVANCE Institutional Transformation Program at Northeastern University. She is an expert on social change efforts to reduce inequalities based on race, class, gender, sexuality, and disability. She has appeared in USA Today and on public radio. Her work has appeared in the Women’s Studies: An Interdisciplinary Journal, The Feminist Wire, The Handbook of Positive Organizational Scholarship, and Doing Diversity in Higher Education. She has a Ph.D. in Sociology from the University of California, Santa Barbara and a B.A. in Politics from Oberlin College.

Metrics of Productivity

Written by Wanda Diaz Merced

During the month of September 2015, I was invited to an inclusion summit by the American Astronomical Society (AAS).  On my way to the summit I took a shared shuttle ride.  A very nice and talkative couple shared the journey with me.  Their destination was their house and mine the AAS office in Washington DC. Of course, we chatted all the time. I love chatting!

The lady introduced herself as a member of staff at the Fulbright Commission. We chatted and laughed all the way. The conversation reached a point where she mentioned her various trips to a country in Africa, to which I replied "I have been there many times too!".  That led me to explain why and to talk about my academic research.  It was very good to hear the “how do you do it?” question right after I told them about my work.

When we got to that point, being unemployed myself, I spoke about how some people’s disabilities lead them to make grammatical mistakes in their resumes, essays and in job application forms that are often not user centered.  I also spoke of technology like screen readers, which despite being helpful, do not prevent us from making mistakes that may lead to incomplete applications or unattached required documents leaving our applications destined for the rejection pile.

I had the same challenge when doing my PhD.  Because I did not ask for a proofreader, upon turning my thesis in I had a whole chapter inserted into the table of contents and during the viva the examiners asked me why I had not included a conclusion chapter.  I had written it but it never made it into their hands.  Beyond that, my examiners mentioned that paragraphs were repeated and pages were numbered twice among other issues.   Luckily for me, my university took action and paid a proofreader, who helped me to correct all the grammatical mistakes and my examiners understood the situation.

However, what about a recent graduate who has a disability causing the occurrence of grammatical mistakes who cannot pay an editor or someone to proofread or help with the job application process?  What about the mentality in scientific academia in the field of astronomy and computer science (I only know astronomy and computer science) of a productivity metric based on written publications?  What about the fact that people who are disabled are expected to perform like a traditional academic (I still use astronomy and computer science as an example) using the same interfaces and perhaps strategies.  As a blind person I have my own strategies; why do I have to be assessed against the established metrics if I have to complete an application that has been made only for sighted users, when I navigate the application with my ears?    How much more difficult is it to compete fairly for a job when your cv is destined for the rejection pile because a grammatical mistake potentially has more weight than your achievements, or because we just could not deal with the presentation of the job application?

I choose to use sound to analyze my data but I have to present anything I find in the data visually to my peers.  When my collaborators bring data to me no one provides a sound file for me to evaluate the data as a peer.  I have also failed to make them aware that I use sound to analyze my data because my performance is at its highest.  They provide a chart.  It is true that the chart may be embossed so that I can use touch to “read” it but in my case having access to the data behind the charts allows me to hear it and do a more thorough evaluation of possible features that may be significant.

I humbly think that while academia is affected by these sorts of inequalities, some are at a disadvantage.  There is no malice; it happens unwittingly but to me this is equivalent to suffer a death by a hundred paper cuts.  At the same time I believe firmly that evaluation metrics have to change to establish a heterogeneous environment in academia, that better awareness will decrease the bias of review boards and that we will be able to level the playing field.  I do not underestimate the effort this will take.  This is a situation that affects all people with disabilities in academia, those applying for post-docs and anyone with a disability who is job hunting.   This is robbing people with disabilities from equal opportunities to display our talents and dignified, meaningful work.  Anyone may develop a disability at any time.  Academics with and without disabilities from every background should unite and work towards leveling the playing field.  People with disabilities do things with our bodies that the able-bodied person has never thought of; if we are allowed to participate as equals, a new type of academia will emerge with people exploring, discovering and employing innovative coping strategies the able-bodied would never think of. 

About the Author

Wanda is a Computer Scientist and Astronomer with a PhD from the University of Glasgow in Scotland.  She is now affiliated to the Office of Astronomy for Development located at the South African Astronomical Observatory in Cape Town.