Mobility At Home

I’m sure it’s very easy for folks to come home from a mobility immersion like mine and, albeit unintentionally, slip right back into old patterns. Sadly for them, they don’t live with Doc Martha, who is all about “consolidating learning” and treating each new day as an opportunity to create positive change, both in your own life and, you know, The Big World!

As soon as she picked me up from the airport, Martha was all, “So this is the new arc! Looks different!” and, when we came upon our first staircase, “Show me that anchor thing.”

Martha and I still walk Maite together most summer mornings, but because this generally involves lots of about-faces and off-roading, I continue to use my cane in my right hand and hold Martha’s hand in my left to be guided.

After my return from Michigan, though, we’ve also started taking short walks, sans Maite, after dinner, with the idea that I’ll walk some useful, short routes, write them out, and eventually walk them independently.

So far, we’ve gone to the post office to drop off a piece of mail (functional mobility!) and to a little joint near us called All Night Pizza, which wounded me by not having chocolate ice cream on the night we went (I could have gotten their fried chicken, if I’d wanted, because I like theirs a lot!).

On both night walks, I walked entirely solo: unattached, no physical guidance, while Martha walked behind me and didn’t assist or run block, other than to give me initial directions, reminders, or help with street crossings (more about that in a sec). We typically walk around the neighborhood linked up, so this is definitely a new habit for us. Also, during walks, if things are calm, Martha will often stand behind me at a street corner with Maite so I can practice just crossing without an attached route.

On our first walk (to the post office box), I immediately became frustrated. I followed the directions fine and wanted to show off my new skills … but, unlike in Michigan, SF has tons of hills! Even in its streets! I kept veering wildly, probably because I was so focused on walking quickly that I didn’t notice I was following a downhill slope instead of keeping my straight line. (In other words, the hill lured me into a false sense of straightness—no pun intended—and caused me to veer.)

One time, I ended up on the wrong up-curb altogether, which horrified me. I … didn’t even know that was possible? Was it possible to have done that in Michigan and I just … never did, magically? Did I miss something?

Anyway, I hope the hills are the problem, and that I can practice those streets enough to learn how a proper crossing feels beneath my feet, even if I am going against the grain of the street. Still, all this quickly put me into an angry tailspin re: can I seriously not go anywhere without there being unforeseen (haha) obstacles? There were some high notes, though. I definitely got significantly less hung up on sidewalk junk, thanks to my narrower arc. Often, I made perfect or near-perfect crossings, although, of course, even without the added hilly complications, these streets are just … different, so different things happen. I always just seemed to hit the domes in Michigan and be lined up right, but our streets are not nearly as straight and nice. So sometimes, even when I tried to line up with the inner curb, it wasn’t quite right, and was only helped when I also compared with the outer curb, which Jeffrey and Hannah told me I didn’t really need to bother with in Michigan.

So I kind of just … realized that the skills I gained are absolutely fantastic, and I learned a lot, and I was and am super stoked and happy and proud that I went and that I learned so much. AND, because two things can be true at once, I hate that the job of being a competent traveler will never be done. They did warn us about this, and I always knew it intellectually, but I still hate it. Especially in terms of blindie things, I like to go after a skill hard, get my proverbial Girl Scout badge (or rainbow stones from Finch) proving mastery, and then move on to the next thing. But mobility isn’t like that.

I know Leader Dog can even send an instructor out here to work with me at home, but, at this stage, I don’t want that. It feels unfair to have to do that when I already feel like I did so much work.

I wish there were, like, short courses for my sighties, so they could become impromptu mobility support ambassador people and immediately know tips that could help me in any given situation. I resent feeling like I need “legit” mobility instruction to puzzle out and plan for the intricacies of every new route.

I do know that, between the two of us, Martha and I can probably figure out a lot of things, and I just need to be patient, and stay willing to practice. It just felt hard when things didn’t immediately go right. I remember feeling this way after coming home from guide dog school, too, interestingly. It’s quite a leap going to an environment where there isn’t an immediate fix or suggestion to an accessibility or blindie skills-based problem.

Someone in Michigan (I think it was Jeffrey, but maybe somebody else we heard from) said that mobility is often hardest in our own neighborhoods, just because people we know might be around and have their own reactions, comments, or feelings to us moving through the environment. Martha and I had a cute situation like this. I was crossing a street and our next-door neighbor, whom we affectionately call “Uncle Wayne,” because he has dubbed me his niece, saw me from the other side. He helpfully yelled, “Come toward me!”

Martha shushed him, and I playfully yelled back without thinking, “No! I’m doing it myself—watch!”

I hit the curb a little off-center, planted my feet (per the technique), swept to one side, found my domes, and sailed up the curb into a good old Uncle Wayne hug and fist-bump. And that was it … because Uncle Wayne is chill and did not freak out about me walking across a street untethered to Martha. I love that guy. I may or may not have jumped up and down and bragged a little.

Martha has also definitely had to wave people on when they try to yield to me as I wait for an all-quiet, all-clear. There was a hilarious moment this morning, on our Maite-walk. Martha and I had detached so I could cross a street solo, with Martha and Maite behind me. A car idled; Martha waved her on and told her to go ahead; and, as she drove through the intersection, the driver audibly grumbled at Martha, “I don’t know what you think you’re doing … you’re supposed to be holding her hand.”

Looool! I know I’m supposed to be ashamed that, because of my example, this woman possibly thinks that hand-holding equates real human guide, AND that Martha and I presumably hold hands on Maite’s walks so often that this woman thinks I’m incapable of walking by myself. I still found it funny and knew her heart was in the right place. I mean, if I can’t hold hands with my wife, what even is the point of my life? I don’t care what the “proper sighted guide” haterz say. This is a hill I would die on. Also, I still maintain that I get much more information and cues from Martha’s hand than I do from anyone’s elbow, even Martha’s. I’ll die on that hill, too. Come for me!

Poor Martha was just like, to me, “I don’t know why that woman just yelled at me.” Heh. I told her that, next time, we can explain that I’m “practicing,” or “learning.” In my experience, those quick buzz words seem to calm people down when they panic about seeing a blindie caning around in the wild while their sightie, seemingly cavalierly and irresponsibly, looks on without assisting.

Interruptions like these, however, don’t bother me. I feel better, in fact, that our people are watching out for me. Seriously, though, I need a resource on which to share these incoming mobility woes and struggles. We have forums and sites and email lists and What’s App groups for blindie notetakers, computers, phones, braille, cooking, shopping, guide dogging, dating, even traveling with the help of Meta glasses. Why don’t we have one for trading good old-fashioned cane hacks? There’s so much lived experience we could all share. We could even have mobility professionals join, once a blindie or two has approved each one and determined that they aren’t paternalistic, saviory, or blind police-like. If I didn’t despise mobility so much, not to mention the way social media has become so janked up re: accessibility, I’d seriously start something. How has this gap not been addressed?

Oh, and for anyone who cares, Martha found me a great, stretchy new fannypack to replace my Braille Sense’s side-bag. So now my cane hand and arm can move freely, but I still have my stuff on my person. And she found tennis tape in cool new colors! AND, my wrist and arm are no longer sore as I use my new, narrow arc and grip closer to the top of the handle, so I’m back to my glittery rainbow canes. Hooray! My aesthetic still lives, mostly.

Stay tuned to this space, if you so desire. Probably, if I can stay in good habits, I’ll start blogging about other things, not just mobility (let’s hope, since I don’t even LIKE mobility, geez!).

I attached my micropet’s egg to my Writing goal on Finch, so I’m motivated to write every night, heh. (That will make no sense unless you have the Finch app. Which, if you do, send me your friend code, please and thank you. I will send you presents and vibes on there for suresies.)

As I used to say on good old LiveJournal back in the day, “Tootles!”

Sticks and Stones

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.

NAME GAME

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.

WELCOME, PLUS A LIFE UPDATE!

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!