Y’all. This world is…something else. I am still moved to tears on a regular basis about what we (the US as well as other countries) are doing in the name of…what? Capitalism? I don’t understand, honestly, how people can continue to act as if nothing is happening. I am doing all the things I know how to do in terms of boycotting and avoiding companies. I am speaking up whenever and where ever I can. And yet I still feel…hopeless. And ridiculous as I try to make videos and write stories for children.
This week I read One Day, Everyone Will Have Always Been Against This, by Omar El Akkad. It’s a deeply personal look at the ongoing crisis in Gaza and the way we, as part of Western civilization are managing – whether we are complicit, witnessing or actively looking away. It was a tough read.
And yet, it’s not all dark. He writes about things people are doing, boycotting and walking away from jobs, students denouncing their universities and others refusing to participate with their dollars in other ways. He writes about the responses of those in power – their shock and dismissiveness. Here’s a quote:
“The idea that walking away is childish and unproductive is predicated on the inability to imagine anything but a walking away from, never a walking away toward—never that there might exist another destination. The walking away is not nihilism, it’s not cynicism, it’s not doing nothing—it’s a form of engagement more honest, more soul-affirming, than anything the system was ever prepared to offer.”
Even as I continue to participate in the ways I have been, I am going to shift my own language away from the things I’m resisting. From now on I want to focus on the things I’m turning towards, smaller businesses, local community and building stronger interpersonal networks. I’m turning towards the arts and whatever joy and understanding I can muster. What are the ideas you are turning towards in this maelstrom?
Image is of a lightning storm at night – it’s dark and cloudy and the lightning looks pink.
Mia Mingus, a disabled activist of color, coined the term “access intimacy” some time ago. I remember stumbling across it and feeling that awe that comes with finally finding a label or phrase which perfectly encapsulates an experience that’s integral to your make-up as a person. To summarize very briefly, access intimacy refers to the comfort and ease disabled folks may feel, either with other disabled individuals or with non-disabled people who have truly become allies.
Being disabled, as is now becoming more widely understood and talked about, means constantly trying to function and find acceptance in a society which is not made for us. Even as a child, before I had language for any of this, I knew who I felt safest, happiest, and most myself around. My dad affectionately created the term “dealing” to encompass the things I often requested: a sighted guide, support around accessing the foods I could tolerate, visual descriptions, answers to my many questions. Even within my family, there were people who did this, if not technically “better” than others, with a certain warm, effortless finesse that I’d certainly never taught. I’m not sure that I’d know how to teach it, even now, though that’s not to say it can’t be learned.
In elementary and middle school, I often had my birthday parties at the roller-skating rink. I took turns skating with everyone. Everyone. It was easy, an unspoken given. Similarly, in college, I could rely on every member of my a cappella group to fill in proverbial blanks. Of course, some became my friends outside of singing, while others remained groupmates. Still, though, everyone understood me on a basic level: not just my needs, but also my strengths. I was expected to pull my weight and contribute, and I wouldn’t have had it any other way.
In my mid-twenties, I realized that my attachment to people — my difficulty in accepting that, sometimes, people come into our lives for a reason and a season — was rooted in more than simply being sensitive. It takes a higher level of trust, as a disabled person, to let someone in: to be vulnerable enough to name your needs and allow them to be met, without shame, by someone who may not fully share your experience. This is especially true when a disabled person takes the plunge to let a non-disabled person in. Teaching about disability, even in an incidental way, is labor. So losing access to that connection you’ve worked to build, as a disabled person, can naturally feel like a multi-layered loss.
Now that I’m a thirty-something, I think about this concept from a slightly different angle. I find myself waxing nostalgic about friendships like high school, college, and shared activities, where interacting with people on a daily basis automatically facilitated access intimacy. I’m lucky enough to be in touch with many of these folks, but times have changed. We’ve moved to different places, lived through different situations, and, in many cases, grown away from one another in such a way that meet-ups can sometimes feel awkward, even though mutual understanding and respect are still indisputably there.
People often say that friendships are harder in adulthood. Aside from neighborhoods and workplaces, it can be hard to find clear-cut pathways to create new connections. As a disabled adult, I both crave those connections and also, often, feel too tired and dispirited to summon the initiative needed to build them. And I do think that disability plays a part in this: a double-edged sword, of sorts. Those true connections can be harder to forge, but they can be so much more rewarding because of the work all parties must put in. I intend to remind myself of this whenever I question whether or not the effort is worth the outcome.
Image shows TJ (Caitlin) sitting on the floor on a space-themed rug, inside a huge baby gate setup with Maite the Rottweiler laying on her back right in front of her. TJ has her Braille Sense in her lap and is wearing her “I am a safe space” hoodie (which is also space themed, complete with an astronaut – although they are not visible). Maite’s mouth is a little bit open, teeth showing, but her face is very relaxed, complete with the whites of her eyes visible. Behind them are shelves with board games, a toy house and other toys. Everyone’s access needs are being met.
Ever had a child swear at you? No, not that kid, not the kid that you just told, “Close the chromebook,” or “Time for bed.” I’m talking about the child who swears at you and then afterwards you are left thinking, “What did I do?”
Swearing is an important part of communication, and I am a fan. I know not everyone is, but I find that it can convey a sense of community (in the right circumstance) and of course, adds emphasis to what we’re saying. There is a whole continuum of swearing, with people who swear so much that the emphasis part of that gets somewhat diluted, and people who never utter swear words, and I respect that choice.
Children swearing, though, is often seen as distinctly different. Some people believe that children should not be allowed to swear, and if we do pretend we cannot hear them swearing on the playground, that at the very least they are NOT to swear at adults.
I generally have a pretty relaxed attitude about it. I have long told children that if they are going to swear in front of me (in my office or in my own family), they can swear ABOUT things, but they may not swear AT people, or call them by swear names (no calling names is a regular rule in my office, so “swear names” is just a continuation of that rule). When kids are following those rules, I really don’t mind when they swear. Even if they are mad at me and using all kinds of swears.
Why doesn’t it bother me much? It doesn’t because I know if a child is throwing around those heavy words, they must feel pretty powerless. I understand that even adults who use those words in the context of a power differential, real or perceived, are doing so in order to exert some power of their own.
Full transparency – it does bother me more with teens and adults – but I still think that words used in an effort to hurt say much more about the person saying them than they say about me.
Image shows Maite laying on the deck from last summer. Her tongue is out and she looks relaxed. She is a great swearer.
HINT: Skip to the end if you're wondering why Martha calls me "TJ."
For as long as I can remember, I wanted a nickname. For whatever reason, I've always connected nicknames with words like "blindie," blind jokes, and the right to (with consent) guide me in an unconventional way. All these things have to be earned. In the same way I despise outer-circle folks going around pontificating about "blindies," teasing me for a "blawkward" (blind plus awkward) moment, or steering me by the shoulders, I have always chafed at people's insistence on calling me "Cait," "CJ," or, God forbid, "Caity," unless they've expressly been told that I liked it.
I wonder if I connected these ideas because, in the same way people project false familiarity around blindness, I feel that people have attached nicknames to me as a means of declaring friendship, connection, or even ownership that isn't really there. Or maybe it's just because, as a blind kid trying to cut it in a sighted world, with extracurriculars, blind stuff, and (then unidentified) ARFID sprinkled over a typical childhood, I felt like I had so little autonomy.
As a kid, I was Caitlin to just about everyone. Very early on, my dad nicknamed me Trouble, or its derivatives, Troub and Troublemaker ... but that was very much his nickname alone. No one else used it until, years later, entirely unaware of my dad's nickname for me, my seventh-grade science teacher also awarded me the same label.
"Cait" and "Caity" were exclusively family names, with only my grandparents and Aunt Linda allowed to use "Caity." My grandpa, with his affinity for Spanglish mixed with the occasional German from my grandma, called me "Diablito," or "little devil." In hindsight, I found it interesting that he didn't use "Diablita"; perhaps this was a nod to my wild-child, tomboyish behavior. I wish I'd thought to ask him before he passed away in 2012.
By fourth grade, I was taking nicknaming into my own hands. My infamous Deraitland bestie, Derek, myself, and some other friends sometimes invented languages. In one, "Caitlin" backwards became "Niltiac," pronounced sort of like "Nil-shyack." In another, "Caitlin" in braille, upside-down, became "Itincoma," which I loathed and Derek, subsequently, used often in an attempt to rankle me.
The nickname I lusted after constantly was CJ, for my first and middle initials. Derek, happily, was DJ, a nickname which I used a lot. CJ never really took, but for a time, we became "Coodge" and "Doodge," with the double Os in "book." But these were very much Deraitland names, and perhaps with good reason. I could be misremembering, but they may have been a nod to our constant fixation with imitating the speech synthesizers of the time. Though CJ and DJ would not have been read as "coodge" and "doodge," those names were reasonable approximations of how a screenreader might have misread them. By fifth grade, I was going totally rogue. I brailled and typed "Cat Hernandez" on all my papers, as though it was my given name. When some grown-ups would obligingly write "Cat" but never call me that, I tried Kit, Kit-Cat, and, in a final, desperate attempt, C. Nothing worked.
"Cait" and "Caity" remained staples with the family; my dad added "It" and "Little It" to Troub and Trouble; and my sister, for reasons I now can't remember, called me Poopsy. My mom, when I was being particularly cute, would call me her "Little Lamb Chop," which I liked only because I loved both lamb chops and the show Lambchop's Playalong. But such a nickname was too sappy for public consumption.
This seems like a logical time to pause and state that I have no problem with the name "Caitlin." It fits me. I'm especially grateful my parents picked the spelling they did, not only because I prefer the way my spelling looks in braille to that of all the others, but also because it enables me to make my albeit somewhat confusing crack, "Caitlin: remember, two Is but cannot C. Get it? Two EYES but cannot SEE," which, if you don't think about it so hard that you wonder whether the "cannot" means you ought to use a K and not, in fact, the correct C, helps people spell my name correctly.
No ... in spite of the fact that there's no good story behind my name, other than that it went well with Courtney, my older sister's name, and that my dad had heard the name and thought it was, quote, "nice," I like my name. I think, though, that I did sometimes come to associate it with being in trouble. Maybe it was because people couldn't wave, make eye contact, or get to me visually, but often, even today, when I hear my name called, even in a casual way, I immediately panic and think that I'm in trouble. Sad, but perhaps true ... and possibly a reason why I always longed for a nickname that wasn't restricted to a certain crew of friends.
In college, I tried to start out as CJ with my a cappella group. A few people used it somewhat, but in more of a tongue-in-cheek way, not as a true nickname. Amusingly, a label which did stick was "Cajherna," derived from my collegiate e-mail address, which I had not chosen. Apparently, there were so many C Hernandezs that the system spat out the second letter of my name, my middle initial, and the first part of Hernandez. I had to dictate my school e-mail address so many times when signing in at events that my a cappella group, claiming it sounded like a sneeze, began to call me that every so often. Another of the Acquire contingent, Andrea, also took to teasingly calling me Button, which came to light because of a random guy who, upon seeing us in Safeway and recognizing us from busking, said, "I remember you all singing, and I had to stop and tell you ... you're just as cute as a button." Some casual ableism there, as he must have known we were both college students and still insisted on treating me like a disabled child. However, as with "blindies," we took the comment and turned it into something fun.
Some other in-group names: * Dez: short for Hernandez, from a later Acquire member, Caroline, and later adopted by the CRE Outreach (now Arts Up LA) boys. * MC, PC, LC: standing for "Poor Child," "My Child," and "Little Caitlin," respectively: all nicknames my dad came up with in the era of texting, again poking fun at people's insistence on feeling sorry for me or infantalizing me, even when nothing is wrong. * Little: What my sister started calling me, after getting me a braille bracelet which read "little sis." (She, of course, is Big, which appalls my mom, because some people are still laboring under the delusion that being big is bad. I might add that, though she's taller than me, Courtney is actually more delicate / small-presenting.) * Ti-Ti: What my niece has called me every since she could talk ... technically from the Spanish Tia, although no one in our family speaks Spanish meaningfully, and I doubt the kid even knows that ... I was just always Ti-Ti. It would be so weird if she ever called me Caitlin.
The thing with nicknames, though, is that, beyond lamenting frequently that you want one, you can't force people to come up with the perfect, awesome, organic encapsulation of you. And then, once they find one, you can't coerce other people into using it ... and even if you could, it might seem weird, or nonsensical, depending on the origin of the nickname.
Which brings us to Martha, and TJ. So you all know our adorable eight-year-old Rock Wilder (Rottweiler), Maite. Mighty Maite. Big MaÃte. Fubu (For Us, By Us). Big Rock. Ruccoon (after Rocky Raccoon). And on and on.
Since Maite was already Martha's "dogter" before I came on the scene, I became "Stepmom" to her. If you've heard any of our videos or recordings, or read transcripts, Maite has a very distinct way of speaking, a little like a kid with some speech quirks, sound additions and deletions, and some unexpected ways of mixing and garbling words and terms. So Stepmom became "Tep Mom" ... and, because I, of course, had told Martha about my quest to be "CJ," CJ, in Maite-speak, became "TJ." And because Martha is Martha, TJ stuck more than CJ did, because MaÃte is such a talkative fixture in our house.
Now, because I'm a rule-following people-pleaser, I did object, "But TJ has to stand for something. It's too confusing to explain, otherwise. How about Trouble Junior? Trouble has always stuck, and Maite is clearly the biggest troublemaker in our house." To which Maite, of course, responded, "That is not no true story, Tepmom, GAH!"
But TJ stuck ... and now you all know the story. And while I would prefer for you to just call me Caitlin, I'm always open to new nickname ideas, should they arise. Just make sure you've earned it, and that I've approved, before you go shouting it all over the place.
I just want to start by saying that I am addicted to my phone as anyone else (TJ probably takes the most heat for this, so my apologies, honey) given the right circumstances. I know that it isn’t our fault, that phones and apps are designed to make us want them, to feel like we need them. They use dopamine against us, as well as the brain’s tendency to focus on the negative (some info on this from Tristan Harris).
I didn’t know much about this until my mom called me one day pretty upset over some puppies that had been found in bag in a field.
Me: Wait, which puppies? Who found them?
Mommy: I don’t know, I don’t think they were speaking in English.
Me: (suspicion creeping in – she once spent at least 10 tearful minutes telling me about a horse being treated miserably before I recognized the 1946 movie Black Beauty) Where did you see this?
Mommy: Tube! (which is how she refers to YouTube)
I looked up the video, discovered it was at least two years old, found the original poster and the follow up video that most of the puppies survived and made it into happy homes. After…
Me: How did you start watching that video, anyway?
Mommy: Well, I was looking at cute puppies, you know, like Blessing (her Pomeranian at the time). They are so funny and small! And then another video and another and then this one. Oh, so sad.
YouTube claimed at some point to make changes to the algorithm but who knows?
All of that to say, I know this isn’t about poor choices or some inborn “addictive tendency,” or even “this generation.” The whole thing is very much designed to keep us online.
Once I realized it, I have done what I can to resist it. I rarely open Tube except for specific videos. I don’t turn on notifications on my phone. I keep the ringer (all sounds, really) turned off on my phone. I have used various apps (I know, ironic, right?) over the years to keep track of my time online or to shut down automatically at 9 pm. I have the timer set on my phone these days to turn off social media after 20 minutes. It almost always surprises me when it pops up.
Meanwhile, I was recently out of town and stayed with a local family. Luckily, my housemate was terrific – we connected right from the first day. We spoke every day, sometimes for literal hours at a time. Then I got sick. My host family and housemate were rightly concerned about getting sick themselves and so I was more or less quarantined in my room.
I listened to audiobooks, but often I do that while doing other things, like chores or driving. I found myself unlocking my phone over and over again to do random searches (some prompted by the book but others just random things that popped into my head). I had to stop and reverse many times because I wasn’t really listening. I found myself reading an email from REI – like ALL the little blurbs. Did I mention I had very little internet? Yeah, that was what was saving me from social media. Without the near endless scroll of social media what I had was: incessant checking of email, reading emails I would usually just delete, crossword puzzles, other word puzzles and incessant checking of email.*
What was missing from my days that led to this drastic change in behavior? People. Like my awesome housemate (plus all my people at home). Humans are hard-wired for connection – we crave it more than food – and not having any was leading me to look for it in my phone. Sadly, mostly what I got from my phone were advertisements – both the obvious and the more subtle. It’s true I also had Signal messages and WhatsApps that helped so much, but I really did refresh my email feed every time I picked up my phone.
You might be asking, what’s your point, doc? My point is, if you notice people around you (because I’m sure you would never) who seem a little too interested in their phones, consider what points of human connection they have access too. For some folks, online connection is the bulk of their contact with other humans. If you aren’t sure, think about how you could help increase those points. TJ and I hosted our first block party about a month ago and we are planning a second one next month, in part to build just that, a bit of human connection. Showing up to events at your local library is another option – those events are harder to continue to host if no one shows up! Just by attending, you are helping maintain access points for others. Hosting a game night, or inviting people to a live music event – there are so many options. As humans, we need other humans. Let’s do what we can to create and maintain these human connections. What do you do to connect?
*I know I said this twice. It really was incessant
Image shows a red background with multiple rows of cell phones with white screens.
One of my fave “coffee shops” in SF is Christopher Elbow Chocolates. It’s in Hayes Valley, which is kind of fancy-pants and pretentious, but it’s freaking delicious, and it was close to where I used to live with my dad. I was introduced to this spot by my friend Kate, who’s a braille teacher, and I still go there with her every so often. I also used to take OK Cupid dates there back in the day, partly because of the comfy seating and close-but-not-too-close-to-home location, but also because the staff were always so friendly, respectful, and accommodating.
I went to Elbow last week to catch up with Kate and had an interesting set of interactions that I thought it might be cool to share.
1. My Para-Stranded driver was very kind: an English-language learner who seemed extra concerned about my well-being because Elbow doesn’t have an easy drop-off spot for the big bus. After escorting me across the street and to the door, he seemed hesitant to leave—not at all in a creepy way, but just a concerned way.
2. This is where one of the staff, whom I’ve interacted with often but wouldn’t necessarily have known by voice, greeted me with, “Oh, hi! We haven’t seen you in a while!”
I don’t know if she did it intentionally, but it served the dual purpose of (a) reminding me that I knew her and (b) assuring the driver that I was in good hands. As disabled folks know, worried non-disableds tend to listen MUCH more to other non-disableds’ reassurance than to OUR assurance … which, of course, is silly, because don’t we know ourselves best? No shade to this driver, though—he was sweet—although I kind of wondered what he planned to do as a means of helping me further? The shop is small. It’s not like there was a staircase I could fall down or anything.
3. I finished greeting the staffer, clarified that I was remembering her name right, and explained that Kate, whom she also knows well, would be coming soon. “Is it okay if I just hang out and wait for her?”
“Of course,” she said genuinely.
Out of habit, I found myself waiting for her to rush out from behind the counter, probably in a panic, and then flounder to guide me. I knew her well enough to know that she wouldn’t grab or pull me, but I found myself automatically bracing to be manhandled anyway. At this point, it’s just reflex to brace when I’m out in the world alone.
Interestingly, and awesomely, she didn’t actually do anything! She assumed competence! In response to that, I, on autopilot, almost asked for her to come and guide me to a chair. But then I remembered just how small and straight this place was, and how devoid of anything that I could damage in any way. It struck me, in a flash, how used I am to letting other people guide me, even when I really don’t need the help, because I’m so afraid of either getting in other people’s way, or appearing inept just by using my cane and doing something in a way non-disableds perceive as “different” or even “too slow.”
“Is anyone sitting back there?” I asked instead.
“Nope,” she replied cheerfully, “it’s all yours.”
And I took my left turn and effortlessly navigated directly to where I needed to be. No hiccups.
Every once in a while, I have these reminders. I remember another one, at my first teaching job. I was called to the phone in a colleague’s classroom while he, myself, and a third colleague were having a meeting across the room from the phone. I expected him to rush across the room and manhandle me to the phone, but he didn’t. I expected him or the other teacher to panic and have an entire fit as I clanked and clattered my way through the thirty-plus empty desks and chairs. But they didn’t. And I reached the phone fine. Maybe with some noise and flailing, but fine. And is it really a crime if I hit a desk or take a little longer? Totally not.
I tell the kids all the time, in response to their appalled gasps when the cane hits something, “It’s okay, that’s what the cane’s SUPPOSED to do. It bumps into things so I don’t have to.”
But I think I forget to remind myself about that sometimes.
I’m so wary of being perceived as hapless just for doing things “the blind way” that I think I sometimes sell myself short. But it feels so good when I’m able to do something simple for myself. And if people flip out about it, I can remind myself that that’s about them and their inexperience with disability. It doesn’t have to be something that I shoulder, take responsibility for, or feel shame about. We may look like we’re struggling, but more often than not, we aren’t, and I will be helping blind-kind more by letting myself flail a bit than by taking the path of least resistance when it’s not always necessary.
4. When Kate and I ordered, the staffer, as she always has, brought our stuff to us, which was very kind. I do think she does this for other folks, and that it’s not just a disability thing. However, she added an extra touch. I’d ordered drinking chocolate (the darkest possible), which is very rich, very thick, and very hot when it arrives.
“I usually fill people’s drinks to the very top,” she explained, “so they get all of what was in the blender. But I thought it might be easier to just give you the rest of the drink in the blender container instead, so you wouldn’t have an overflowing cup.”
I can imagine some blind-kind being pissed about this and going into a rage, railing at her, saying that they can very well drink the same damn drinks as sighted people, thank you very much. But I, personally, have a hard time holding very hot, very full cups gracefully. I appreciated the gesture and told her so.
5. After a delightful visit with Kate, I took Stranded home. The driver was new and couldn’t find my house. Martha wasn’t home and I was already late to feed the dog, so I asked the driver if he could just park and make sure I was in the right vicinity before leaving. He agreed to this, and we were, in fact, not far from my place.
Once we’d found my house, he very sweetly noticed that our trash cans were out and offered to bring them in for me. I thanked him and told him that wasn’t necessary, but that if he could wheel them slightly closer, I would go ahead and pull them in myself right away. This, I explained, would eliminate the need for me to flail all around the general area of the trash cans with my cane, trying to find where the bins had been left.
He understood this and followed my instructions to the letter, respecting my autonomy and giving just the amount of help I’d asked for. Even when I wrestled a little extra hard with the recycling bin, which is bigger and more unwieldy, and which I wanted to nestle in a spot I could more easily find when I opened the garage door to wheel it in, he was already walking away and didn’t comment. It shouldn’t be a novel thing when people genuinely hear me, but it is, so I always notice and appreciate it just that little bit more.
In closing, I just want to note that I’m not asking for advice or criticism for how I handle myself and mobility-related situations. I know I’m not perfect. No one is. I’m just sharing this because I find it interesting, and in the hopes that it may help someone else whose approach and struggles may be similar to mine.
Peace, hugz, and rainbowz to any and all who want them!
Image is of a cup of hot chocolate on a saucer. There is a spoon that has clearly already been in the chocolate. The cup and saucer are sitting on a tiny wooden tray, just wider than the saucer. To be clear, this is NOT TJ’s hot chocolate. I got this image from Unsplash (shout out to the photographer, Ashkan Forouzani) and thought it would make a nice addition. For sighties.
Lately I find myself sitting with a feeling of absolute disbelief with a side of despair. I haven’t posted much about what’s going on in the world because I feel like I don’t always understand what’s happening, but I do regularly repost videos and posts on insta from sources I trust. These are folks who have done their research, and I appreciate their work so much. Having an explanation can give us a place to work from – a way to identify where we might have agency. And a sense of agency is important. When we fall (or are pushed) into the feeling that nothing we do will make a difference, we are immobilized. For individuals, feeling like we don’t have voice or choice increases anxiety and/or depression. It decreases creativity and motivation. It can keep us from trying new things, from food to ideas. It adds a sense of hopelessness – of being stuck. There are people with more power than you or I that like nothing better than when people feel stuck and without recourse.
This week I heard about the 48 Counties in Totonicapan that gather together monthly to decide what best for the people in that region, and it gave me a sense of hope. That organizing does work. That what we do can make a difference.
I’m always interested in what gives other people hope. Let us know in the comments!
If you are interested in following other folks: @ykreborn @lynaevanee @resmaamenakem @blairimani @ibramxk @wkamaubell @sogoreatelandtrust @asianmentalhealthcollective @prentishemphill @missxtinab
Image shows the wall of a shop covered in brightly colored shirts from the market in Totonicapan.
…wherever you go, there you are. TJ (Caitlin) calls me The Ruiner, and it’s a title that I hold with pride. IYKYK. However, noticing racism, ableism, sexism and other oppressions takes a toll. TJ and I went on a cruise, y’all, and I had no idea what to expect. Neither one of us has ever done it, but this was our idea of a vacation that combined travel with a special interest, so we decided to go for it.
I’m not sure why I was surprised to find that this floating hotel was a small microcosm of the US. Or maybe a slice of rich mostly United Statesians. Yes, there were people there from other places, but we mostly ran into yt people from the US. Also, if you are looking for the highlights, you’ll have to scroll to the picture at the bottom.
The whole trip started out rocky because they (the cruise line AND the Star Trek folks) refused to make the printed material accessible to Caitlin. All they had to do was email her the things! I know that those documents exist in e-form, because they were printed out and left in our rooms every day. I’m guessing they were printed before we left shore, so they could have, in theory, emailed her everything before we left. Yes, I know things can change, but they could have said, This is how things stand right now, and the schedule is subject to change. It’s not that hard. And I suspect that kind of accommodation would be helpful for many people, not just blindies.
And speaking of accommodations – I saw a number of so-called service dogs on the boat. I know, I know, there’s no way to tell from over where I am what those dogs were there to do. There are MANY ways a dog can provide a service that I would not be able to see. That said, I saw several that I had serious doubts about. The thing is, if I had doubts, other people also had doubts. I’m not saying people cannot have their service dogs with them. At all. But there are people who game the system and convince someone that their dog qualifies. If that dog then behaves badly, it makes it that much harder for people with actual service dogs to get access later.
Meanwhile….colonizer vibes were everywhere. Almost all of the people working on the ship were BIPOC. Wait staff, cleaners, stewards and cooks, all BIPOC and working with a level of invisibility that I found super uncomfortable. Passengers (mostly yt) walked past them without a word, so much so that when we greeted people they seemed surprised that we noticed them. We heard one woman tell the wait staff that he needed to have his eyes checked, and asked if he was blind because he jokingly told her he needed to see her ID when she ordered wine. I met someone just before the trip who had worked on cruises before and they told me that they don’t make much money and that tips would likely be appreciated – but twice employees told us that the tip was too high, and tried to give it back.
The whole thing was extremely wasteful, too. Given that the food is included, I knew there would be waste, but it was more than I imagined. We made it to breakfast just once (it was a vacation, y’all. Don’t judge) and as we were going out I saw a man scooping yogurt out of the cup and into a bucket. Straight to the trash. I get it, once they’ve put them into those cups with fruit, they can’t save them for the next day, but there were another dozen cups waiting for him. Every day I saw many people leaving piles of food on the table as they left the dining area.
The steward was prepared to change our towels twice a day! And sheets once a day. I told him that wasn’t necessary for us, but walking down the corridor our room was on I saw people removing piles of towels and linens from the same rooms every day.
Image shows TJ gleefully petting a dolphin. She was the only one in our group that got to tickle a dolphin and the resulting vocalizations were awesome.
All of these things are present in my everyday life – but on a boat out in the middle of the ocean – there was no respite. I loved being able to spend pretty much every minute with TJ. I was happy to watch her enjoy the Wave Rider and go down the water slide. I enjoyed some panels and Tim Russ jamming with his band. We got to hang out with dolphins which, while also fraught, was a fantastic experience. We walked around holding hands for hours every day. We read and talked and laughed. I love her dearly and appreciated every minute of our time together. AND I was VERY ready to get off that boat at the end of the trip. TJ and I really have co-created a life that I love, and I feel fortunate for every minute of it.
Hi, people!
So, in case you are either (a) fully sighted with no blindies in your corner and-or (b) living under a rock, you oughta know that Facebook, in addition to all its inherent security and political badnesses, is becoming a regular trash-heap of accessibility problems. The most heinous of these include having to go through ridiculous work-arounds to do things as simple as composing a post, writing a comment, or being able to know what link we’re clicking on before we leave Facebook. Again, basic things. Totally unacceptable that these issues have been dragging on for literal months. Non-disableds would not stand for this.
As you can imagine, this app inaccessibility, combined with the fact that Facebook Mobile (on the computer, not the phone) is now also a cluster, has made me less and less inclined to post status updates. Therefore, ergo, and henceforth, the plan is to move gradually away from Facebook and more toward blogging. Will it work? No one knows. But it definitely won’t work if I don’t try!
Let’s break it down into nice paragraphs. I’ll even do little fake titles / headings. Mostly for the sighties. I think they like that. But I’m not doing formatting.
WHY A BLOG?
A long time ago, Martha and I thought it might be fun to blog together. Do you like our cute title?
Dots: speaks, of course, to my love of all things braille.
Doc: Have you met Doc Martha? She blogs and Instas already, but hopefully she’ll bring some Doc Martha Magic, as I call it, over to this little corner of the Interwebs.
Roc: The cool shorthand way of spelling “rock,” which is for Maíte, the Rock Wilder (Rottweiler). She is our eight-year-old dogter and we love her. She enjoys raw meat, singing, chasing “creachers” to the best of her abilities, and “para-ambulations.” She may guest-post on here occasionally, if she’s not too busy “ressing” in the “tsunchine.” Plus, we, all three of us, rock. And enjoy rocking out.
Most updates, I imagine, will be more brief and topical, but I have a few life updates that I think it will be helpful to fill you folks in on so you know where we are these days in Caitlinworld. I’m also not going to update on, you know, seemingly everything in ways I once did, but more things that feel more sharable for, and consumable by, the general public.
SCHOOL
This is my ninth year of teaching. It is ridonculous. Like, seriously, I don’t even know how that happened.
To make a very, very long, nine-year story short, I’m still having problems with our school district, to the point that I was pushed out of a school due to accommodations-related reasons. Last year, for the first time, I taught a special-day class for third, fourth, and fifth grade students with mild to moderate disabilities, in the hopes that the main accommodation issue would be less prevalent. In fact, the issue was still prevalent, and a bunch of other issues in that setting compounded it, most notably never being fully staffed.
Our school district is infamous in the news for its struggles and, thankfully, school sites seem to understand that, with almost a decade of special education teaching under my belt, I’m actually a useful staff member to have on their team, in spite of the fact that, you know, I can’t see things. This year, I’m back teaching small groups of kinders through fifth graders at a little elementary school that’s actually walkable from our house. The children are delightful, and some of the most hardcore, dedicated learners I’ve ever had. We haven’t had a special educator at our school for the past two years, so from the get-go, my crew, by and large, were extremely eager to receive the support.
I know some of us, myself included, miss kid-quotes! Kid-quotes make the world go ’round, don’t they? I have gotten out of the habit of putting them in a palatable format; I just tend to scribble them in my daily notes and across my lesson plans. And I haven’t made up kid-names in ages! But I will keep chewing on the idea of bringing them back. Maybe in, like, a weekly or monthly digest?
ARFID
As some of the long-time Facebookers may recall, my therapist was able to give me an official diagnosis of ARFID, or Avoidant Restrictive Food Intake Disorder. For the uninitiated, ARFID is often handily explained as “more than picky eating.” It’s when people struggle to eat typically, due to low interest or appetite, fears of choking or becoming ill, and-or sensory-based things like flavor, color, texture, etc. For me, it’s mostly about texture and poor hunger cues.
The texture component has been present for as long as I can remember, but the interoception piece, I think, worsened during the shelter in place, when eating was much less structured. School and being out and about in the world tends to help me with scheduling my eating; I just never really thought about it that way.
Long story short, after the shelter in place and returned to school, I had unintentionally lost a lot of weight, due to eating both less food and less frequently. I worked on it over the summer, got some guidance from providers familiar with ARFID, and joined some ARFID Zoom groups. Things got better for a while, but got worse throughout the school year. ARFID on its own was difficult enough, but last year, we were extremely short-staffed, and I wasn’t used to teaching the special-day class.
By the end of March, I’d lost so much appetite and weight that even Kaiser people were concerned, and I was referred to a partial hospitalization program in the city. I had to go on medical leave for the rest of the school year, and was at the program for eight hours six days a week. That gradually decreased as I was able to work on my eating.
Because ARFID is such a relatively new disorder, there aren’t really best practices on how to address it. I ended up trying a new med, which increased my appetite drastically and helped me put on weight rapidly, but it made me feel absolutely miserable. I quit the med after about a month, but it took a while to taper down, which was very unpleasant. But I’d put on enough weight and learned enough new skills that I got sprung from the program.
The folks at the program were pretty kind, and … well, you all know me, I brought my signature joy as best as I could. If nothing else, being able to focus on eating and not stress endlessly about school helped, and then I had the whole summer to stay in good patterns.
This school year has gone so much better, and I’ve kept up with eating … knock wood. My main takeaways have been to just TRY to eat, even if I don’t think I’ll be able to. And to eat whatever feels doable, even if it’s not what I quote “should” be eating. Relatedly, we have banned the concept of “junk food” in this house. It has been renamed to “simple” food, which you say with a French accent and hair-tossing. I will do a video of it sometime.
So that’s the ARFID update. Oh, also, we’ve been doing some fun videos of me trying new things, but, thankfully, the program did not force me to eat different things. They encouraged me to eat a higher volume of my “safe foods,” which was a big relief. I’ve never felt motivated to eat, quote, “normally,” and my blood tests have always been okay, thanks to vitamins and, at some points, iron.
OUR LITTLE FAM
Image shows Maite lying on the couch with her rainbow pull toy between her paws. She has a big, open mouthed smile on her face. The colors are interesting (to me) because the wall behind her is yellow, the cover she is on is blue, and underneath that is the red couch. Very bright. Very Caitlin. – Martha
We’ve now been in our house for about three years.
We have the best next-door neighbor ever, “Uncle Wayne,” who calls himself the Mayor Of the Street. He is hilarious and always keeps an eye on us. Martha, in particular, knows all the dogs and their families, too.
We also hosted a block party, and now have a great sitter and walker for Maíte. So I feel like we are slowly but surely finding some community.
WRITING
This part saddens me: I have done literally NO writing. No Facebook posts, but also, for the first time in my life, I don’t have any story ideas, either. It’s super saddening. I did NaNoWriMo successfully for the first time in 2023, but flunked out midway in 2024 … and the stuff I did in 2023 wasn’t that great.
STAY TUNED
Hopefully, I can stay on this wagon and get back in the posting / writing groove! Think good thoughts for me!
If you made it this far, I shall send you e-hugs and rainbowz!
I am loving the Vida album by Ana Tijoux. Especially Millonaria.
dot doc n roc 