Invisible Disabilities

This postcard is made by Kundiman, a wonderful organization that promotes Asian American poets and writers. For lots of reasons, it’s one of my literary homes.

Last week, the Kenyon Review Online published my essay, “Even If You Can’t See It: Invisible Disability and Neurodiversity.” I’d been thinking about writing about academia and mental health for years and began to write the essay this past summer. I realize now there’s much more I could write and want to write.

Many, many people (a shocking amount to me, really) wrote and emailed and messaged me after reading the essay. I hadn’t really been thinking about what the response would be (probably because that might have spooked me–positive or negative). Thank you to the readers who trusted me with their stories and let me know about the impact of my story on them.

I posted three addendum on Facebook after my initial post of the essay. I’ll include them here, because they are essential. A couple of important points toward transparency: I could not have written this essay without my family’s support (see #2 below). After losing that job, I moved home for a few years, which allowed me time to write and apply to other positions. The next is that I am not teaching full-time now; if I had been there’s no way I could have written this essay. I would not have had the bandwidth or time.

Here are my three additional posts from Facebook.

1. Dear Friends, Thank you for all of your messages and comments and emails. I got a little overwhelmed, but I’m reading them and will write back. It means a lot to me. Rather than call anything I’ve done brave (thanks, though), it would mean the most to me if you ask about accommodations at your workplace. Request the policy. Push back. If you are neurotypical and have the bandwidth / spoons, ask and get information for people who may not be able to. Educate yourself about the ADA. Depression is covered under it. ADHD is also (I have some form of this as well, but didn’t include it in the essay). If you’re in academia, get on a committee that looks at HR and health care and disability accommodations. Same if you are a teacher, and work at a high school or middle school. Students have accommodations by law. Those disabilities don’t go away when you begin to work, become an adult. If you are white and in academia make sure that your co-workers of color are not carrying the burden of what the institution deems to be important re: diversity work. My former chair (from when I began at that job) said to me, “You won’t have a problem with tenure. You are well-liked.” Helpful mentoring. Get some real mentoring policies in place. Especially for faculty who are working class / coming from working class / poor backgrounds, and/or first generation college, and/or immigrant, and/or of color…there are rules in academia, but most are unspoken. This does not help those of us who don’t know the rules. You spend so much money to conduct a search and hire someone…spend some time and money learning how to keep them.                           
2. Two more things: I haven’t told my parents about this essay. So if you see them or talk to them or know them, please don’t say anything about it. They are very private people and not on social media. I also wanted to acknowledge what is unstated, but all over the essay: the enormous and incalculable emotional, moral, financial, and practical support from my family all these years. Those periods of mania and deep depression could have been disastrous without it. I have had and still have so many advantages, and It’s been hard even with all these privileges. I have health insurance. And so many Americans don’t. So think about that. I do, all the time.

Sejal Shah

January28at11:47AM · 

3. Hello FB Friends: I have been mulling over all the comments and messages and emails I’ve gotten in response to my essay. They have been very moving. I don’t know what the fallout will be in my personal or professional life. What I do know: many in my social media world / community are professors and I think most of you are tenured. Please, use that privilege to speak up for people who may not be able to b/c of potential work consequences. And PLEASE examine and interrogate the policies and practices around diversity at your institution. Is it actually creating MORE work for faculty identified as diverse? If so, something has to change. White people, step up. Also a race-only definition of diversity is offensive and inaccurate. There are people still in all of the situations I was in now. And there are faculty who could have spoken out or done something. Maybe they didn’t think it was their responsibility to do so. (Don’t feel the need to say sorry to me now. Actually, no one has.) It was an open secret about my former professor to many faculty and some students. I think my work colleagues didn’t know and everyone is busy, neurotypical and neurodiverse, both. But consider the consequences of NOT speaking out at meetings, looking at policies, seeing if there are codified mentoring practices in place. The sense I had at my former institution was that I was seen as somehow having fallen through the cracks. I had an incredible support system through my family and friends, as well as socio-economic privilege. If I fell through then others will too–unless people (senior colleagues, administrators) are actively invested in making sure this doesn’t happen.

I’ve had only positive responses to my essay and these posts except for a lone commenter, who admitted she was not actually responding to my essay or the ideas therein, but rather to my call to white people to step up.

Her initial comment to my above post:

A far more serious divide in academia is economic: i.e., the one between tenured faculty and part-timers. It’s a horrid system, one that’s been created and stoked by greedy administrators who have no desire to turn back the clock to a time when universities actually gave a shit about educating students and paying their instructors fair wages.

• Sejal Shah Agree that it’s terrible—the economic divide. I’ve also adjuncted. Everything that I’ve described is a problem is that much worse for those without fair pay and fair contracts.
• 

  Sejal Shah Far more serious divide than what? While I think the current system of tenured vs adjunct faculty is terrible, my goal in my essay was to write about a particular aspect and time period of my experience in academia. I didn’t focus on, for example, my later experience adjuncting. There are many things I would have liked to include, but there was not room for in this one essay. Maybe in a future one. You could write about it, too.

  Finally, it was a LOT of work and time to write my essay. It’s not exhaustive—there’s more I wish I had explored and written. However, it’s not my job to address every ill in academia. I absolutely agree that this divide should be written about. I look forward to your writing or anyone’s take on it. I myself don’t have the spoons currently. I’m taking a break to turn to other work I have to finish this week.

  Commenter:  Sejal, my comment wasn’t directed toward your essay, but was a response to your call for “white people” to step up. I agree totally that is incumbent upon those with power and privilege to agitate for a better, fairer system. But in academia, many people–both white and POC–are powerless owing to the tiered economic system.

  XXXXX, my call was to ALL tenured people, including “white people,” in those positions of power and privilege in the academy. (Read my whole note again, including the beginning where I address my FB friends who are tenured faculty and administrators.) However, if white faculty and admin cannot see that it’s unfair to pile all diversity work on POC, it’s a problem. And they are also benefitting from an unfair system. That’s where I’m asking white people (who are in positions of power such as tenured faculty positions) to “step up.” I think many of my white colleagues didn’t know about this work—why would they, when they are not asked or expected to do it? For example, I served on a diversity council and not official committee, but it has the same amount of work and meetings as a regular committee. Whose labor counts? Whose is acknowledged? My comment is in response to MY situation in MY essay. If those who are not marked diverse (usually this means white) also push back against a race-only definition of diversity it will help everyone. Also if they understand that real diversity benefits everyone and should not involve only POC doing more work to satisfy white administrators and their checked boxes.

  On that note, back to the book….

New Year, New Goals, Reviewing, Readings

Reading at The Library of Congress, July 29, 2017 (photo credit: Kundiman)

For the last few years, I’ve written annual goals, reflecting on the previous year, and it’s extremely helpful. I used the Writer’s Workbook 2019 by Annette Gendler, and also used her workbook last year. You can download her workbook for free by going to her website and signing up for her newsletter, which comes rarely and has good information in it.

In reviewing 2018 and 2017, I made note of two milestones I want to remember. They are both readings, and they were both videoed.

1. In 2017, I read from one of my essays at The Library of Congress, as part of the Smithsonian Asian American Literature Festival. It was a tremendous experience, and the readings were recorded. Mine begins at around 1:18. You’ll hear a bit of poet and Executive Director of Kundiman, Cathy Linh Che, introducing me. It’s the largest audience before which I’ve read.
2. In 2018, R. gave his first reading: before an audience of 700. Here’s the link. He’d never done anything like that before. He was in a show called Listen to Your Mother, and he had to write something original and audition to earn a spot in the cast. R’s piece was very moving, and I’m proud of him for venturing so far outside of his comfort zone. The reading is much shorter than mine. Feel free to comment—I’ll pass along any words to him.