Hi friends! Normally the more essay-ish issues are behind a paywall but this is going to be a mix of things and I want it available freely in hopes that more people find the information useful. First, I have some quick links to share up front that I think you should know about:
A Fish Has No Word For Water: A punk homeless San Francisco memoir by my friend Violet Blue is now available on Kindle after an impressively successful Kickstarter
Book Riot has posted our 2023 Read Harder Challenge if you’re looking to diversify your reading
Book Riot has also posted the 2023 Reading Log if you’re the kind of person who is into spreadsheets, charts, and graphs
As many of you know, I rushed my mother to the emergency room on 12/19/2022 and she was finally discharged on Xmas Eve. She has been staying with Nicole and I in our one-bedroom apartment and we have unexpectedly become full-time caregivers. The past 2+ weeks have repeatedly punched me in the face with my own ableism that I wasn’t even aware of and I have been learning a lot, really fast, in very hard ways. I want to share some of this with you because maybe you’re also ignorant in the ways that I have been ignorant and there is still so much I do not know but half of my whole schtick is sharing information so I would be remiss if I didn’t share what I have learned.
I am a big fan of asking for what you want or need even though it’s something I am still working on doing myself; however, in this time of crisis, I don’t even know what would be helpful and I lack the capacity to proactively reach out. I’m almost constantly in survival mode right now and it wasn’t until this experience that I truly understood how unhelpful it can sometimes be for folks to say, “Let me know how I can support you.” I’ve said this phrase thousands of times myself and I am by no means admonishing folks who say it as I am very grateful for the offers and it’s still a super appropriate thing to say. The tricky thing is that this phrase puts the onus on the people who already have too many things on their plates to think of ways that the asker, specifically, can help out. Me being me, I also want to set people up for success so I add pressure to also think of things that are that particular person’s strengths etc.
I am currently making about 6 meals a day because mom cannot eat most of the same food I’m making for Nicole and I and we have no microwave. Nicole is waking up every 4 hours at least to administer meds. We are working our full-time jobs. I am handling all phone calls with medical staff. We have no dishwasher and Nicole washes dishes by hand multiple times a day. I’m amazed she is getting our clothing laundry done. And 10,000 other things. My brain blue-screens when someone asks a general, “What can I do to help?”
It wasn’t until my two best friends from high school offered highly specific things that it clicked. My one friend said, “I’m making lasagna. Can I bring you lasagna?” The other one, who lives around the corner from us said, “I am picking up food in the neighborhood. Can I bring you a salad from the restaurant down the street?” Other friends have sent money or restaurant gift cards. Highly specific offers have changed everything. Offer to pick up and do laundry (a friend has done linens for us and I almost cried. We live in an apartment building and only have access to shared, paid washers and dryers). If you cannot think of anything, here is a handy list for you to bookmark and I’m sure with more web searching you can find more resources.
At the beginning of 2021 I thought I was being a “good ally” and I figured I would learn some basic sign language in case I come across someone who is hearing-impaired and needs help, which has definitely happened to me so I wanted to “be prepared.” First of all, not all hearing-impaired folks speak ASL (American Sign Language) and also I am in Oakland and Black American Sign Language (BASL) exists so what even was my plan, honestly? Because I am who I am, I first looked to the internet if someone had a list of “Sign Language Signs that Everyone Should Know” and I found that someone had asked this question on Quora. The answer was brilliant because it was basically like, “There is no sign language you can just learn on the fly that would be more helpful than just having a pen and paper. Most people have mobile phones and can just type in their notes apps.” I know not everyone has a mobile phone so I always have a pen and small notebook with me.
Currently my mother has a stubborn double-ear infection and she cannot hear. Typically she can hear fine, but she hasn’t been able to hear for weeks now. Her first night in the ICU I went to Target and bought a small dry erase board and markers and we mostly used that and texting for her stay in the hospital. It worked for what it was but friends, I still made things more difficult than I needed to. My mother and I have Android phones and in the Accessibility section there is an option to turn on Live Transcribe. HOLY SHIT this has been helpful. Mom can totally talk, but can’t hear. I just turn this on and it’s pretty okay at transcribing real-time; however, it is not perfect and hijinks have ensued. We’ve used it at many doctors’ visits (and all the doctors and nurses were amazed and had never seen it before and that is a whole other related problem) and unfortunately, that is where a number of the clownery of the application has happened:
I said, “We’re checked in.” The phone read, “raw chicken.”
Nicole said, “We need to get you a secondary…” The phone read, “We need to get you a second baby.”
I said, “Amlodipine.” The phone read, “a lot of penis.” I yelled, “no no no amlodipine, amlodipine!” and the phone read, “a lot of penis! A lot of penis!”
You cannot take us anywhere.
The amount of time it takes to currently get my mother ready to leave, then down to the car, then into the car, then out of the car and into a wheelchair at the clinic then checked in is quite a bit of time. More time than we anticipate each time. I am deeply ashamed at my ableism and the grace I have not afforded far too many people. I am quick to say, “You don’t know what other people are going through” but I need to be better at actually leaning into this. I want to be clear: it is incredibly shitty behavior to be upset at people arriving late to most things, but especially doctors’ appointments. I’m not perfect and sometimes I am awful and like many folks, I’m learning how to be better.
I want to start off by saying that I do not shit on people who use Amazon because if I’ve learned anything from disability activists, it’s that Amazon can be really fucking helpful for disabled people. I typically just don’t use it much myself and opt to buy things in-person when I need them; however, we did not expect my mother to be hospitalized then released into our care so suddenly I needed things like nightlights and chuck pads and a mattress cover and a giant pill organizer and socks that have grippy stuff on the feet and a shower mat and a stool for the shower and on and on and it was 2-3 days before CHRISTMAS and I was too busy with Mom to drive around to multiple busy Target locations to hope to find these things to make our home safe for her. Having the access to funds and the access to Amazon has helped save my mother from further injury.
All this is a reminder that is a privilege to be able to avoid the most convenient options, even thinking beyond Amazon. I am grateful to have read How to Keep House While Drowning: A Gentle Approach to Cleaning and Organizing by KC Davis, which has helped so incredibly much to adjust my views.
All of the things I mentioned are all things I’m sure many (most?) disabled people know and I am very late to the game, as many non-disabled people are. We have so much to learn and there’s so much to be done. Yes, I follow and read people like Alice Wong and Imani Barbarin but again, there is always more to do. Thank you for reading this far and thank you for your support.
That’s it for this week! You can shop any books I’ve mentioned in this newsletter at my affiliate shop, The Infophile’s Bookshop, and support independent bookstores. If you want to send me some snail mail, you can find me at P.O. Box 21481, Oakland, CA 94620-1481. If you are a subscriber and would like for me to send you some happy mail, feel free to give me your address.
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