I had my six month check-in with my oncologist today, to go over the results of my latest CT scans and treatment plan moving forward. Six months was the rough estimate for how long they would keep me on the aggressive 4-drug infusion regimen we started in April. This turned out to be an accurate prediction since my final (12th) infusion was cancelled at the end of September because my blood platelet count dropped below the threshold where they authorize treatment.
Even with the cancellation of that final infusion, the last set of scans — taken October 5th — show a continued and substantial decrease in the size of the areas they are watching in my liver. This is really good news. The largest area has dropped from 3.8cm before start of treatment to only 5mm (roughly 1/8 the original size). That is a 50% decrease since the previous scans. Other areas have become too small to show up on the scans. So the aggressive regimen over the summer really paid off.
The challenge, as I wrote in my last update, is that I am not currently a good candidate for surgery, given where the areas of disease remain. The multidisciplinary treatment group my oncologist belongs to, and consulted last week, agreed with this assessment. So chemotherapy remains the best option for me during the next phase of treatment. I’ll continue to do twice-monthly infusions for at least the next three months before we evaluate again. The silver lining is that I will only be on two of the four drugs during that time and the two we are eliminating had the most onerous side effects (Irinotecan and Oxaliplatin). I completed the single on-site infusion (Leucovorin) in about an hour this morning and feel pretty normal. Now I’m just hooked up to the take-home infusion (Fluorouracil, or “5-FU”) for the next 46 hours, which — while logistically a bit annoying — doesn’t typically make me feel crummy. So hopefully my day-to-day energy and routines will be a bit more stable with a less intrusive treatment regimen — yet with continued progress on reducing the cancer cells. My oncologist will also consider it a successful intervention if they keep the cancer spots from growing; all of my other markers for healthy organ function remain stable and good. We will continue to assess how the drugs are working and add/remove things as necessary in addition to considering whether surgical intervention becomes a viable option.
While not full resolution/remission news (which would have been GREAT but which, given the last assessment, we didn’t expect) this is a positive trajectory overall and I am glad to have a sense of what the shape of the next three months will be like in terms of daily and weekly routines. Thanks to the support from my colleagues, I continue to work remotely and flexibly from home to minimize COVID-19 and other exposures while I am immunosuppressed. I am also a candidate for the booster shot which I am working to schedule at some point in the near future.
We are grateful for all of the ways your care has made this rocky road easier to handle. My parents are planning to visit again over Thanksgiving and we look forward to our typical slow end-of-year holiday season where we take some extra vacation time to reset as we look toward the beginning of a new year. I hope all of you have some holiday plans to look forward to that suit your own style and COVID situation.
Last Tuesday was my ninth chemotherapy infusion and we met with my oncologist to discuss the results of the latest CT scans documenting the progress made over the past two months. Progress is, again, good. “Significant,” in fact, according to my doctor. The largest lesion on my liver — which in March was 3.8 x 3.8 cm in diameter has shrunk to only 1cm! The other two remaining areas of concern are smaller. There is also nothing new for them to monitor. This is all excellent news. I will continue with the next four chemotherapy treatments as scheduled and we will meet again in early October to determine where we stand.
The biggest hurdle at the moment is that the remaining areas of disease on my liver are not clustered in one place but disparate, making surgery something that is not a straightforward solution. My oncologist is going to present my case to a multidisciplinary team that she belongs to here in Boston, from which she is hoping to get some suggestions other than chemotherapy, for dealing with the remaining disease.
Sans surgery, I have the option to continue with a (likely less aggressive) chemotherapy regimen as a sort of maintenance routine beyond this initial six month window, particularly given that I have been able to tolerate the treatment and the cancer cells have been so responsive to it. What that would look like is not yet clear since we are waiting to see where this third chunk of aggressive initial treatment gets us. I will have my next update for everyone the week of October 4th.
Thank you all for your continued care in so many ways.
Hanna and I met with my oncologist today to discuss the results of my first four rounds of chemotherapy. We received very good news! The chemotherapy is doing its job: The two largest cancerous areas on my liver that they are watching have both shrunk by 50-60% and many of the smaller troubling areas have disappeared entirely.
While I am still very much in the midst of active treatment, this indicates that the chemotherapy regimen I am on is working effectively. The next step will be to do another four rounds of treatment and repeat the scans to see what further changes result. Further down the road, the treatment plan may change as (hopefully) the cancerous areas become more isolated and easily targeted.
Chemotherapy is not what I’d call a fun way to spend my time, but my body is mostly tolerating the cycles without super disruptive side effects. I’m grateful to everyone in our lives who’ve come together to support us and make it possible for me to accommodate treatment — and the ups and downs that come with it — while also participating in other life activities like work and crafting and being out in the wider world (tentatively; still masked …).
Thank you, thank you.
In a couple of other medical-adjacent updates, Hanna’s recovery from her own surgery continues smoothly and she has returned to work as of June 1st. Christopher has also seen an improvement in his health following a dental appointment at which he had eighteen (!!) teeth removed. As his mouth heals he seems much more comfortable and is even exploring the possibilities of human laps. Our household is on the collective mend.
I was sharing my coffee shops analogy for social media spaces, boundaries, power, and negotiating our personal digital networks recently and the person I was talking with asked me to write it down do they could, in turn, share it with some people they thought it might help. So here it is.
I should acknowledge up front that I owe a lot of how I think about social media to scholar danah boyd. She’s brilliant and if you are feeling overwhelmed or unsure about navigating your online spaces I found that her It’s Complicated: The Social Lives of Networked Teens (Yale Univ. Press, 2014) was super helpful, even though I’m not a teenager.
It’s also important context that although I have been on social media 2.0 type networks since they truly emerged in the mid-2000s I have never been a major player. My public reach has been modest and for whatever alchemical reason born of intersecting privilege and chance I have never had major harassment issues despite being a queer woman who says a lot of stuff online. So my coffee shop analogy is very much about navigating a more interpersonal digital public where many or most of those you interact with on platforms like Facebook or Instagram or Twitter are people you also know (or knew) in some capacity offline: at work, at school, at church, in the neighborhood.
A few years ago, the new president of my library decided she would make a Twitter profile. Our previous leadership had not been that into social media but my institution has a couple of popular Twitter accounts and I was involved in helping to run one of them at the time. So I was part of our president’s orientation to Twitter etiquette and norms. And at one point, early on, she asked my permission to follow my personal Twitter account.
The first thing I did was thank her for asking. My account is not locked. It’s always been tied clearly to me, including the me that works at the Massachusetts Historical Society. I do follow and am followed by co-workers. I interact as me with our institution’s social media presence. Many bosses would see this as fair game, no permission required. But she asked for my permission. And while I think she was probably surprised when I asked to think about my answer she accepted that request graciously as she did my final answer which was: no.
And the coffee shop analogy was how I explained my “no”.
Imagine your favorite local coffee shop. One a wide variety of people in your community (however defined) use. One day you might meet a close friend for lunch. Another you and two colleagues grab coffee. On Saturday you and your bicycle crew or games night group meet up. While you’re at your table with your chosen mates for that particular visit, a myriad other visits are burbling along in that same space. You might overhear some amusing tidbits. You might drop by the table of an acquaintance on your way back from picking up your coffee and ask after their foster kittens or admire a new outfit or whatever. But you haven’t been automatically invited to plop down at they table of any group in the shop and weigh in on their conversation just because you bought a latte at the same place. And they aren’t entitled to that either! Maybe you’re having a conversation about writing erotica with your friend who also writes fic. Your boss happens to stop by for lunch. It’s fine if they wave from the queue or probably even stop by to say hi on the way to their table. It would be weird and uncomfortable if they insisted on sitting at your table every time you and they crossed paths at the coffee shop no matter who you were talking with and what you were talking about.
This is, as an aside, why I don’t follow current co-workers whom I supervise directly (have power over); I also don’t pay attention to if they follow me or not (they are free to do so). Power has a role here. Especially if you are in a context where you might need to decide about following/friending people you have power over IRL (as their teacher, professor, therapist, pastor, boss) have a personal policy about what you do in general and always make saying no a meaningful option for any person who may worry that not giving you access will make them vulnerable.
So when you’re thinking about being online in a social media environment, and responding to interactions from those in your social networks — from friend requests to a Facebook post response to the appearance of someone in your Twitter thread — it could be helpful to think about your interaction in the context of a coffee shop. Your Facebook post, your Twitter timeline — that’s your table at the cafe. You get to decide whom you invite to that table day to day, and what you make visible at that table to a wider audience. Some conversations might be more open than others; maybe you’re purposefully setting up a table to sign people up for an activity or maybe you’re having a long catch-up with a close friend. Those are two different kinds of table uses. The entire coffee shop doesn’t have a right to access your table, every table, and plop down to participate in every conversation.
You have tools (imperfect, usually, but still available on most platforms) to help you signal and manage which tables are more open than others. And if someone intrudes on a table where you don’t want them it’s okay to disinvite them. I often acknowledge with a digital wave of some kind (a heart, a like) that someone I know has interacted with a photo or an update I’ve posted — but don’t feel the responsibility of responding at length to each and every interaction. I’ve blocked rude and noisy strangers, immediately and freely, who treat my table at the coffee shop like because I’m sitting in public they can invite themselves to have their morning coffee in my space: Nope, sorry (not sorry). My timeline isn’t for you, no matter how public my profile is. Dudes on Instagram who think they’re gonna get some sort of private chat going with me (very visibly gay married?) are summarily deleted. Marketers who think my cat photos should be monetized instead of enjoyed by friends have their comments deleted from my posts. Your table at the digital cafe is yours.
Just like in offline life, some of those interactions are likely to be delicate or fraught — there’s gonna be a colleague who thinks they’re closer friends with you than you do, or someone from church who is simply more social and would invite every person they knew who stopped by the coffee shop to their table. But think about how you navigate those situations in your offline interactions and you’ll maybe be surprised how many of those offline tools and intuitions can be mapped from offline to online spaces. The ethics are not wholly a thing apart.
Anyway — hopefully that analogy helps! And hopefully someday we’ll be back to those cozy, eclictic coffee shop afternoons where I can go read my book and write and wave to the occasional friend who swings by for their afternoon pastry.
A few updates from the Clutterbuck-Cook household this first week of May …
It’s been a rocky road, including one re-hospitalization for an emerging post-surgical infection, but Hanna is slowly making her recovery from surgery and this week we have been able to take slow walks through the Arboretum and Roslindale Village square, which feels like a small return to normalcy. The blooming things are giving it their all this spring and it really has been nourishing to get out and see the flowering trees and shrubs and flower beds a little more regularly than was possible for much of April.
All of the food and gift cards and well-wishes that people have sent to us since the cascade of health crises began in early March have been so generous and are supporting both of us in our healing — it’s been such a relief to have meals delivered and restaurant gift certificates so that we can eat good food without the burden of meal planning, which neither of us have the bandwidth for right now. Magical! Thank you all.
We’ve also been gifted with yarn, and gift cards to purchase yarn, which has brought abundant color into our household and enabled me to embark on some projects to learn “slip stitch” or “mosaic stitch” knitting — a technique for knitting two-color patterns. I’m working on a shawl currently with a red background and a pink-to-charcoal gradient that I’m super excited about (progress photo below). It’s my project for chemotherapy days, which are long and boring. It’s nice to keep my hands and mind busy while I’m being infused.
Returning to Work
Let’s talk about work and illness.
One of the first things I did when I was hospitalized back in early March was quit everything. I mean everything. I handed off everything I was doing at my primary workplace. I told every professional group I was involved in that I would be absent until further notice. I dropped every book review I had pending (with notice to my editors, obviously). I paused every side project I had going, like Persistent Stitches and #QueerJoyGiveaway and the Ida B. Wells biography manuscript, and volunteering with a local mayoral campaign. It all went on indefinite pause.
I returned to work on April 26th after having been out on full medical leave (due to hospitalization, then surgery) since March 4th. I was able to take that time off thanks not only to my workplace policies but also to the Massachusetts Paid Family and Medical Leave program which compensates workers who must take extended time off for reasons like mine. It was a pretty seamless process to apply for and be granted benefits — and I
I’ve set some ground rules for myself on working during chemotherapy. They include:
Not taking on any professional obligations (whether volunteer or paid) outside of my core job at the Massachusetts Historical Society. Even things that I thoroughly enjoy doing, and plan to do again, like book reviews, will remain on hold until chemotherapy is done.
Not working outside of my usual work schedule (9-5, Monday – Friday) even if medical appointments or ill health mean that I can’t work for a chunk of the work day.
Not doing work while at chemotherapy infusions.
Working entirely remotely while immunocompromised, which also allows me to drop things in order to lay down and rest when sudden fatigue sets in.
I’m extraordinarily privileged in that my supervisor and the leadership of my institution are 100% in support of my plan to put my health first, and trust me to judge my own bandwidth and to be up-front about what I can and cannot do during this phase of treatment. I also know that, if working even within these parameters becomes difficult or impossible, I can downshift to partial or full medical leave again and transition back to state benefits for a period of time. It’s also weirdly fortunate that this health crisis has coincided with our institutional response to the pandemic; we are still physically closed to the public so my inability to serve at the reference desk or cover a reading room shift is less of a burden on my colleagues than it would otherwise be.
No one should feel pressured or be obligated to work while dealing with a serious health condition; everyone should have access to the kind of security and flexibility that I have been afforded to make participating in the life of my institution possible even while I am not feeling my best. Do what you can in your own workplaces, communities, and political contexts to get us closer to that reality!
Liver Biopsy Results
Unfortunately there were no happy surprises to come out of the liver biopsy that I had on April 16th. They did find that cancer cells matching the cancer cells from my colon have migrated to my liver. Thankfully, my liver continues to function normally and the goal is to combat the cancer growth there with the current chemotherapy regimen; the first assessment of progress will happen in early June after four treatment cycles.
In the business of finding silver linings right now, I’m relieved that the cancer cells in my liver were detected and diagnosed now — because without the sudden colon cancer hospitalization and surgery, as long as my liver continued to function unimpeded I would have had no reason to seek out medical attention to diagnose liver cancer. And things could have gotten much, much worse before treatment.
Now that Hanna and I are fully vaccinated (we received our second dose of the Pfizer on April 26th!) my parents — also fully vaccinated — are driving out from Michigan to spend about three weeks with us in mid-May and early June. We had discussed the possibility of a visit to coincede with Hanna’s surgery and my first round of chemotherapy, since they wanted to offer practical support, but we all felt strongly that we should be vaccinated before travel and co-habitation. So now we have the chance to look forward to welcoming them to late spring in Boston, hopefully when both of us are feeling a bit less totally flattened by the past three months, and they can help ease some of the logistics of transportation and errands and cleaning at the point when Hanna transitions back to work following her own medical leave in the midst of my continued chemotherapy treatment. For obvious reasons we haven’t seen them since October 2019 and we are looking forward to a low-risk reunion!
I’ll probably not post another update until mid-June. Hopefully, things will continue on a steady and healing path between now and then. Thank you to everyone, near and far, who continue to send healing thoughts, words of encouragement, cat photos, flower photos, and other myriad kinds of support for me and our family as we weather this difficult season.
About the #FuckNNM Hashtag: I’ve had a few questions about the hashtag #FuckNNM2021 that I’m using so the backstory is this: Lots of people were joking around New Year’s that, if 2020 was one long March that we were never allowed to put behind us, then was 2021 simply New March? And then when March 2021 rolled around, and we started getting all of the year-since-the-US-lockdowns-began I joked that March 2021 was, maybe, better known as “New New March.” That was shortly before I was hospitalized so at the time I created the hashtag “Fuck you, New New March!” seemed like an appropriate sentiment. Although this situation has far outlasted New New March (unless we want to argue New New March lasts until 2022…) I’m keeping the hashtag for the purposes of content collation.
Medical Update – Started Chemotherapy This Week
So I’ve started chemotherapy this week. While, obviously, the entire situation sucks it does feel good to be taking further steps to address the cancer cells hanging out in my body that we’d like very much to evict. Chemo is largely pain-free and, so far, has been relatively side-effect free as well. KNOCK ON WOOD. The following is probably tl;dr (“too long, don’t read”) for a lot of people but I figured some of you might want to know what my treatment cycle looks like right now so here it is.
On Day 1 of the cycle, I go into the clinic and have blood drawn and vitals taken. They run a bunch of tests to ensure that my immune system and other bodily functions are where they would like them during chemo (I will be immunocompromised but they want me not too immunocompromised). While I wait for the test results, I meet with either my oncologist or a member of her team to go over my symptoms and overall experience — how has my appetite been? fatigue? nausea? etc. Once both the blood test results and meeting with the oncologist have cleared me for chemotherapy I can begin onsite infusions. If they determine intervention on some point they are tracking is needed I may not be cleared that day and they will bump the next infusion forward until the issue is taken care of.
Assuming I am cleared for infusions, I am set up in my own cubby — a fairly spacious nook with windows, a lounge chair, and a curtain for privacy — and they begin the infusions. I have 30 minutes of “premeds” — medications such as anti-nausea medication designed to ease the chemotherapy treatments — followed by three chemotherapy infusions: 1.5 hours of Irinotecan followed by 2 hours of Oxaliplatin and Leucovorin infused concurrently. At the end of that set of infusions, I am hooked up to the portable pack of the final chemotherapy drug (Fluorouracil, or “5-FU”) which is given on a slow release over 46 hours. I can then return home while that drug does its work. I return to the center after 46 hours (on Day 3) to have my port “de-accessed” (meaning they remove the IV line) and am given a timed injection to boost my white blood cell counts the following day. Then I am good to go for the next 11 days before repeating the cycle all over again.
Side effects so far have been mild. One of the infusion drugs gave me clammy sweats while being administered (something that stopped as soon as that infusion ended). I have a hypersensitivity to cold air or items (grabbing items from the fridge or frozen items and sudden changes in temperature, like stepping outside into a cold wind) which triggers tingles on the skin like when your hand or foot falls asleep. It is supposed to fade the further out from infusion you get and doesn’t cause any permanent damage. They anticipate that I will likely have hair thinning or loss of hair based on one of the drugs I am getting; too soon to see that yet although I pre-emptively trimmed my hair on Wednesday so there was less to deal with in the first place. Thank you to everyone who has either sent scarves, or yarn to make hats, or other creative suggestions! Right now, I’m making a crocheted pouch for my slow infusion packet, which I have to wear/carry for 2 days of every cycle. After that, maybe I’ll turn my hand toward some head coverings.
Thankfully, the sense is that whatever side-effects I experience this round are likely to be how my body consistently reacts to the drugs. So I shouldn’t be getting fun!suprise!effects in cycle eight or whatever. And the team is very down with proactively managing whatever symptoms I experience — particularly those like nausea that impact quality of life. So that is comforting. They have already added an iron infusion to my next “premed” regimen because I am slightly anemic and they don’t want the problem to compound.
I also had a liver biopsy on Friday 4/16 to determine the nature of some lesions on my liver that showed up on CT scans while I was in hospital. While my liver is healthy overall, and function continues normally, the oncology team thinks that some of the colon cancer cells may have migrated to my liver. Chemotherapy treatment will move forward as planned, but the biopsy results may guide decision-making for drugs used and other targeted treatment in future. Not the best news but we are taking things one treatment step at a time and thankful for my access to expert care.
Lotsa Helping Hands Care Page
A friend of ours has kindly offered to help coordinate any care needs we have over the coming months, such as meal delivery and transportation. She has set up a care page using the Lotsa Helping Hands interface. If you would like to have access to this community page, please let us know (email: annajcook [at] gmail [dot] com) and we can send you an invite. We have ways for people physically close by and also geographically distant to help out.
A Note about Hanna’s Surgery & Recovery
As many of you know, Hanna had surgery last week and is simultaneously through her own recovery. This was a scheduled hysterectomy, on our spring calendar long before I was hospitalized, to address chronic pain related to fibroids and endometriosis. We decided not to postpone the procedure for her overall health and well-being despite everything else going on. Recovery has been slow, because of the extent of the endometriosis that had to be removed, and on Wednesday night we took her back to the hospital for treatment of an incipient infection. She’s been on IV antibiotics and I am hopeful about bringing her home later today for a much-needed quiet weekend. We’re moving very, very slowly in the Clutterbuck-Cook household these days but grateful to have this surgery behind Hanna that will hopefully address persistent discomfort that has been building over the past several years.
In gratitude for your continued presence in our community of care,
As many of you already know, I was hospitalized in early March for digestive troubles that turned out to be caused by a blockage in my colon. The blockage was surgicallly removed while I was in hospital, I’m recovering well from the surgery, and my digestive system seems to be back online. Food, and the ability to eat it, is delightful!
Now that I have clearer information about the underlying cause of the blockage in my colon, and a treatment plan, I feel comfortable sharing a bit more with all of you. I have been diagnosed with colon cancer. The bad news is that the cancerous cells they removed had advanced pretty intensively into the colon tissue and surrounding lymph nodes. The good news is that I have no family history of, or DNA markers for, colon cancer. The doctors have also found no evidence of spread to other organs. I am young for this type of cancer, and otherwise healthy, so the doctors are encouraging. The next step will be a roughly six-month course of chemotherapy meant to stop any remaining cancer cells from getting fancy ideas. I have an appointment with a medical oncologist next week, when I expect to learn in more detail what that course of treatment entails.
Obviously this isn’t fun news. In fact it’s fucking shitty news. I had hopes — even some tentative plans! – for 2021. None of them involved being diagnosed with cancer and coping with treatment. This is more like 2021 rudely decided to try and out-suck the dumpster fire that was 2020. Really, 2021? Really?!
2021: “Hey 2020! Hold my beer!”
However, I am extremely fortunate to have access to excellent health care — geographically accessible and well-insured — and to have all of you in my community of care. I’m currently on medical leave from work and have hit pause on all of my professional and volunteer activities until further notice. That means that I can focus on all the necessary medical stuff; on being at home with Hanna, and our cats Teazle and Christopher; on feeding myself and resting; on being in communication with close family and friends; and on doing activities that bring me pleasure and support my overall wellness. Knowing that I can put down work, work-related, and other life responsibilities right now has been a huge relief and I’m grateful to everyone who has stepped in to handle aspects of what I do while I am focused on survival.
I may not respond individually to every message or photo you Tweet, DM, text, email, etc. in the coming months but please know I am seeing your messages and it means a lot to Hanna and I that you are out there thinking of us and expressing care. I plan to give occasional updates here, as well as using the hashtag I established during my hospital stay for relevant social media commentary: #FuckNNM2021 (for “Fuck New New March 2021”). I also still have my monthly newsletter that will include either updates or links to updates here.
Note: I wrote and sent this email to Kathy Ishizuka, Editor-in-Chief of School Library Journal on the morning of February 4th prior to the release of the “About Our Cover” statement. The statement is not an apology and outright rejects the widespread intepretation of the cover as blackface/minstrelsy. Creators of racist media, whatever its original intent, don’t get to adjudicate whether or not the impact of that media is racist.
As a longtime reviewer for Library Journal and facilitator for LJ professional development course, including Equity in Action: Building Diverse Collections, I am writing you today to add my voice to those who have critiqued the February 2021 (vol 67 no 2) School Library Journal cover story, “Why White Children Need Diverse Books” by Drew Himmelstein, and particularly the accompanying cover illustration.
It is true that media created by people, and featuring characters, from minoritized communities should not be pitched by library workers as only for people from those specific communities. When I facilitate Equity in Action courses I caution my students not to assume that if they work in overwhelmingly white areas (for example) they are free to continue purchasing overwhelmingly white media. Or that media with queer characters is only enjoyed by queer people. The same is true for any marginalized identity or experience — we want our patrons to browse our collections and find as wide a range of identities and experiences as possible, inviting them to explore worlds both like and unlike their own. Marginalized people usually do this by default when navigating a world not organized around their experiences, needs, and desires. People whose identity and experiences align with the dominant culture often need more purposeful exposure; richly diverse library collections can create opportunities for that wide-ranging experience.
However, that does not mean that those around whom the dominant culture is already organized (in this case white children) should continue to be centered in these discussions. The SLJ cover illustration should never have made it past the concept stage. Minstrelsy and blackface — white people performing Blackness for white pleasure — are thoroughly racist practices with long, violently exclusionist histories in the United States. The SLJ cover evokes this history through the visual depiction of a white child casually trying on a Black child’s face by holding up the book cover to cover part of her own body. To place white children’s needs and pleasures at the center of a discussion about Black children’s stories — particularly during Black History Month — is an act of white supremacy. It asserts that the justification for stories about anyone other than white people is, first and foremost, about meeting the needs, or fulfilling the desires, of white audiences. That assertion does harm. SLJ owes the community an apology, and must take steps to address the harm you have done, as well as reviewing the process by which it happened, to minimize the risk of similar future acts.
Dear [LJ/SLJ Professional Development Team],
It’s with a heavy heart that I write to you today in order to withdraw from facilitating the upcoming LJ/SLJ “Equity in Action: Fostering an Antiracist Library Culture” course. I have made this decision following yesterday’s statement from Kathy Ishizuka regarding the February School Library Journal cover story, “Why White Children Need Diverse Books” by Drew Himmelstein, and particularly the accompanying cover illustration.
I wrote to Kathy yesterday morning [see above], before the “About our February Cover” statement was released, expressing my concerns about the timing and framing of the piece as well as the blackface implications of the cover illustration. Kathy’s statement compounds the harm done by the article and illustration in a number of ways. In it, she continues to center the priorities/perspectives of white librarians, asserts that encouraging white children to read about people and characters different from themselves is a “provocative notion,” and refuses to accept the validity of the blackface/minstrelsy interpretation of the cover illustration. The statement is not an apology, does not represent a first step toward accountability, and does not provide a concrete plan of action for ensuring this type of harm toward Black library workers and library users will not continue. In fact, it appears to reject the idea that this article and illustration are truly harmful.
These actions do not foster an antiracist library culture. They are a denial that the library world, including School Library Journal,are systemically complicit in upholding white supremacy. I cannot ask students in the Equity in Action course to trust the guidance of LJ/SLJ in doing antiracist work when the School Library Journal leadership not only sees no problem with centering white anxieties during Black History Month, and approved a blackface cover illustration, but has also doubled down on those decisions when Black librarians and their allies pointed out these problems. This is the opposite of the kind of behavior we need in order for antiracist change to happen.
In making the difficult decision to withdraw my labor from LJ/SLJ because of this situation, I am following the lead of at least two presenters, Dr. Nicole A. Cooke and Dr. Sarah Park Dahlen, who yesterday withdrew from the Equity in Action courses in protest. I am willing to consider remaining involved in the “Equity in Action: Building Diverse Collections” course later this spring, as both a speaker and facilitator, but will need to see a meaningful apology, accountability, and a concrete plan of action from SLJ in order to participate. When it comes to assessing how successful SLJ is at meeting this criteria, I will be listening to Black librarians in the weeks ahead.
I realize this situation is not of your making, and am sorry that this impacts your work and our working relationship. I truly enjoy supporting the students in these professional development courses as they earnestly work to improve their practices and their collections. I hope that SLJ leadership takes action such that we are able to find a way to continue this work moving forward.
Correction 2020-02-05: In the original version of this letter I misidentified Dr. Nicole A. Cookeas Dr. Augusta Baker. Dr. Cooke is in fact the Augusta Baker Endowed Chair and Associate Professor, School of Library and Information Science, College of Information and Communications, University of South Carolina. My apologies.
Last week I saw a Twitter thread shared on my timeline several times that I didn’t understand, and when I clicked into the thread in an attempt to learn more I became even more confused. A bunch of queer women appeared to be arguing about whether bisexual women were “allowed” to use the word “dyke” — a slang term that’s been around since the early twentieth century , typically referring to queer women who are “mannish” in appearance. Think about the Dyke Marches at Pride and Dykes on Bikes, or the long-running cartoon serial by Alison Bechdel Dykes to Watch Out Forwhich is how I, a teenager in the 1990s, first learned and grew fond of its warm, rebellious edges. Since going down the rabbit hole, I’ve been lurking and reading — on Twitter and elsewhere (Tumblr, reddit) — where these policing conversations are taking place and I’ve written a number of Twitter threads about the themes that I’ve seen. Below are those threads in blog post format. I may update as the dyke police watch continues.
I think what I want all the babyqueers trying earnestly to police the use of “dyke” by people who identify as (among other things) as dykes is this: The language of gender, sex, sexuality, desire is not fixed. We are always becoming, and doing so in relationship with the world. The idea that our gender/sex/sexuality is super specific, innate, and fixed is a very recent and historically specific truth. That doesn’t make it less valid for those who find meaning in that paradigm. But it is not universal. It is not everyone’s truth. Yes, we want to be careful with our words. We want to use the language others choose for themselves and know the power and meanings of the words we use for ourselves. Those meanings may be multiple and contextual.
Words I have used to speak about my queerness that are all true: fluid, bi, gay, pan, demi, lesbian, sapphic, dyke, queer, not straight.
It’s particularly important to me — as a woman with bi/demi/pan desire, who for a full decade plus gaslit myself convinced I was not queer “enough” — to gently yet firmly remind folks that telling bi people they can’t identify as [insert queer term here] has a bad history. We do very real harm by telling bisexual people “you do not deserve these words” which is another way of saying to bisexual people “you do not deserve to be a part of our community.” So if you are being told somewhere by folks that “dyke” is only appropriately used by specific women (setting aside who polices on a case by case basis each person’s qualifications…) please stop and consider whom you are being asked to harm. And if you’re okay with that. And remember that it is OKAY to change and learn and grow and let go. The words you use, even for yourself, today may be different from the words you choose tomorrow.
I honestly had no idea until two days ago this was a thing and now I can’t stop thinking about how fascinating and wild it is that there are people who’ve decided that bisexuals and lesbians are two circles on the Venn diagram that do not, and never have, overlapped. Just as one single example of how ahistorical that notion is, as recently as the 1970s historians have seen the use of lesbian/ism and lesbian desire to refer to (typically cis) women desiring women … the exclusivity of that desire wasn’t necessarily assumed. So many women who identified as lesbians / with the lesbian or gay community experienced bisexual desires during their lives. In some cases they also identified as bisexual, or shifted to using bisexual as their primary language of identity. But not uniformly so. So it’s fascinating to me, from a historian’s perspective, to see that there’s a cohort of people who’ve suddenly decided this group of jumbled-up queer women constituted two entirely separate groups with separate genealogies requiring a boundary that needs linguistic police.
I’m skimming through primary sources here on social media and so struck by the fact that a recurring definition used for “lesbian” by the people saying bisexuals can’t use “dyke” is “lack of attraction to men”. As a reader and writer of romance, I will say that a story about desire that is defined by what is not desirable rather than what is desired is always a huge red flag to me. Like … you can’t describe your attraction to women as attraction to women? You still have to define it in relation to men? That’s fucked up.
Another slippage that I’m seeing as a scroll through the primary sources here on social media is that there’s no distinction being drawn between hurling “dyke!” at someone as an act of aggression and someone using that word as a cozy self-descriptor. For me, in reference to myself, it’s like pulling on a fuzzy oversized sweater. But, like, dudebro hurls it out of his pickup truck at me and my wife on our walk to the grocery store — not fuzzy at all.
“Gay” is a totally mainstreamed word that bigots also weaponize. Context matters!
Continuing my adventures in reading the “bisexuals aren’t allowed to say dyke” corner of the Internet, here’s another slight-of-hand I’m seeing that is extremely red-flaggy from both an activist and historical perspective. The historical sources this crowd cite as origin documents all come from a period when “lesbian” was a term used both for behaviors (one engaged in lesbian acts rather than being a lesbian) and included women who might now identify as bi.
They acknowledge and/or are confronted with this historical context — that their argument (lesbians are the only people who can use the word dyke because it’s a derogatory term only used toward lesbians) is undermined by the documented usage of the term over time — but shimmy around the problem by arguing that now lesbians (the group against whom the word dyke was originally hurled) include a much narrower group of people, and that narrower group of people are the people who have the right to police usage.
This also conveniently ignores that dyke is a word that not only has associations with same-sex desire but has a strong historical association with gender presentation — so a case could be made it’s not primarily about whom you have sex with but that you present as a “mannish” woman.* So the self-deputized dyke police also put forward a fascinating (to this historian of sexuality) theory about community ownership of histories: that it is (a very specific) present-day definition of a community that determines who has the right to the community’s history. If we take as a given (which I don’t) that at some point around 1969 “lesbians” and “bisexuals” found enlightenment and became two wholly separate communities, when before they had maintained only one, who, then, has the “right” to the pre-history that included both? The folks currently defining “dyke” as the sole property of “lesbians” maintain the only people who identify as their particular, current-in-the-moment definition of lesbian have a legitimate claim to the pre-history of queer women. That claim situates this particular group as the most lesbian, because it places them in the position of continuity with lesbian forebears, while all other queer women must apply (to them) for the right to even speak the words of that shared past.
At this point, I’m not going to directly engage with these folks because 1) a lot of them seem to be quite young and I’m not parachuting into their timelines as a grumpy older stranger because that’s a shitty power move, and 2) they clearly don’t want to discuss this. But I do want to put out there, for any peers or younger folks they are currently bullying, from me and all of the other queer folks who feared for years we weren’t queer enough to speak the words: YOU ARE ENOUGH. You are queer enough. This is your history. Speak the words that help you make sense of who you are in the world & connect with people in the past & present who help you feel less alone. The people with delusions of grandeur telling you what you’re “allowed” to say are wrong.
*Remembering that all of this historical-contextual usage developed during a time when our understandings about gender and sex, and the relationship of gender and sex to desire, were very different than our understandings today.
So two items of note from yesterday’s dyke police watch. They decided to lose their shit over a man on a con panel who gave a shout out to a lesbian colleague’s podcast: “Desperate Housedykes.” There were, I understand, other content problems with the panel. It’s not my fandom and not my lane to speak to those. This thread is only about the dynamics around a man saying “dyke” as part of saying the title of a queer woman’s podcast.
The angry dyke police keep making, in this situation and others, comparisons between the word dyke and the n word which I think is a really noteworthy tactic. By claiming that anyone other than (their narrowly defined category of) lesbians uttering the word dyke under any circumstance is analogous to non-Black people speaking the n word they are elevating “dyke” to a potency level of universal hate that it never had, and certainly doesn’t universally retain today.
I would argue this move, and the rhetorical strategy of replacing dyke with “the d slur”, enlists the power of structural racism and anti-racist activism in a completely inappropriate way against a word that has had a much less violent, much more mixed-bag history.
Why? That’s my current question. Why take a word that the queer community has used creatively in a wide variety of activist and social ways since the 1970s and attempt to re-stigmatize it? Yesterday’s argument, that the word should be unspeakable, would make the creative work of many queer women difficult to promote, to recommend, to squee about, to share joyfully, to discuss in a class, or review comprehensibly. When we use “dyke” we use it for a reason. While obviously people who are uncomfortable with the word can choose not to say it, I am deeply troubled by the way they are trying to make our chosen words unspeakable by others.
On the first Saturday after Massachusetts declared a state of emergency due to COVID-19, in March 2020, I decided to give away twenty-five copies of R. Cooper’s A Little Familiar novella as a way to bring good cheer to people struggling with isolation admidst social distancing and stay-at-home directives.
The giveaway has since turned into a weekly event as weeks have turned into months and we’re probably looking at a year and more of some measure of social distancing, quarantine, stress, and exhaustion.
How it Works
The giveaway guidelines are simple:
Each Saturday, I post the weekly title on Twitter with the number of copies available (generally ~$25 worth has been my budget).
Copies are given out on a first come, first served basis to those who request a title via the request form.
Readers are limited to ONE title per week, but may make a request each week with no limit.
The default mode of delivery is Kindle e-book delivered as a gift via Amazon; if a reader doesn’t use the Kindle platform we work out an alternate method of delivery (I have learned a lot about how hard some platforms make it for you to buy e-books as a gift over the past four months!).
As long as our household finances can support this effort, I plan to continue this project. It’s a win-win-win as far as I’m concerned since I get to put books I love into the hands of readers, signal boosting talented creators and spreading rainbow sparkle happily ever after joy at a time when a lot of us need to be dreaming of queer futures filled with hope rather than despair.
I want to be clear, too, that this is a personal project. No publishers or authors are paying me or supplying these books in exchange for free advertising. These titles are all books I have personally read and loved, by authors whose entire body of work I encourage you to explore — most of them are wonderfully prolific and deserve all the sales! When I make my weekly selections I’m working to be mix it up in terms of relationship types and other kinds of marginalized identity rep — but I’m also sharing my faves so this list definitely skews historical, paranormal, and queer. Super not apologizing for that.
Co-sponsors: If you’re interested in sponsoring copies of upcoming titles, shoot me an email at firstname.lastname@example.org. I would be happy to be able to increase the number of copies of certain works, particularly since authors from under-represented communities often cannot afford to sell titles for really low cover prices — meaning I’m left to offer fewer of those works within my budget. Sponsors who donate $25 or more to the project get 1) a shout-out, 2) a copy of their choice of any title I have previously offered and 3) a copy of the title they sponsor.