Category: Disability Rights & Advocacy

Exploring accessibility, inclusion, and equal rights for people with disabilities. From policy discussions to personal experiences, this category highlights barriers, progress, and advocacy efforts for a more equitable world.

Running on Fumes: Solo Home Edition

I’ve been home alone for more than a week now, with Jason away until Tuesday, and I’m running on fumes.

Here’s why. I’m doing the things Jason normally does. I’m keeping the house clean and not letting the dishes pile up in the sink. I’m keeping the litter box from smelling up the apartment. I’m making sure the kitchen and bathroom trash don’t add to the funk. And I need clean clothes for work, so the laundry can’t wait either. If I do all of that right, the apartment will look like nothing happened. That’s the part nobody sees.

Let me be clear: I’m not complaining. I like a clean home, and I can keep one. What I want to talk about is cost. Most chores take me more time and more energy than they would for someone else, and when I only have so much of both, every chore comes out of something else I could have done.

Why Jason Is Gone

Jason is my partner, and he’s also my PCA. This year, Minnesota is moving people from PCA to a new program called Community First Services and Supports (CFSS). Because of that transition, there’s a gap in my hours, and the new program doesn’t start for me until November 1. We asked the county for an extension of my PCA services, and as of today, I haven’t gotten one.

With a month of no work, Jason decided it was a good time to visit a friend in Los Angeles. I knew about a week and a half ahead, so I had time to prepare. What I didn’t expect was how clearly this stretch would show me what those supports do. They don’t just get chores done. They give me the energy I need for everything else.

What Jason Usually Handles

Most days, a lot of the household runs through Jason, and I don’t always notice how much until he’s gone. He feeds the cat and cleans the litter box and any messes. He sets up the coffee for the next morning. He asks what I want for breakfast and lunch and gets both ready, and sometimes he gets the dog’s lunch ready too. He helps me get dressed once I’ve picked out my clothes, helps me with my shoes, and sometimes puts the cape on Surley. When I head out the door, he locks it behind me.

None of those jobs are huge. Together, they’re most of the small tasks that fill a day. When he’s here, I spend that energy on other things. This stretch, I’ve been spending it on all of them myself.

The Daily Math with Jason Gone

With Jason gone, my mornings start differently. I have a cup of coffee and feed the dog. Then I get the dog’s lunch ready and into my work bag and check that the cat hasn’t thrown up his breakfast. He’s on an automatic feeder that doles out small meals through the day, and I adjusted its timing because he occasionally throws up right after eating. I’d rather that happen when I’m home and can clean it up easily. Then I clean the litter box, looking around to see whether he went somewhere else in the apartment.

Somewhere in there I go to the bathroom, pick out my clothes, and get dressed, which is energy I don’t normally spend. I decide whether I’m taking a lunch and whether I’ll eat breakfast at home or grab something at work. A couple of days, that meant Caribou Coffee. Then it’s teeth, shoes, jacket, and Surley’s cape, and out the door. Locking it behind me is usually Jason’s job, so that’s one more thing I have to remember.

I get home between 5 and 5:45, check the mail, set down my work bag, and take off my jacket and Surley’s service dog cape. Then I check the apartment for cat throw up and clean up any I find. The cat gets a can of wet food, the dog gets dinner, and I grab one of the premade meals I ordered ahead of time so I didn’t have to cook lunch or dinner on top of everything else, feeding one of the animals while it heats in the microwave.

After I eat, I clean up and do whatever dishes are in the sink. Depending on the time, I might play video games for 30 minutes to an hour. Around 8, I take the dog out one last time, then set the coffee for the next morning. One day I forgot and woke up with none. Another time I set it but forgot to turn on the timer. Then it’s teeth and pajamas, and I’m in bed around 8:45, watching about an hour of TV before I fall asleep. At 4:45, I wake up and do it all again.

None of that is hard on its own. But it’s a long chain of small things, and if I drop one link, I usually find out at the worst possible time.

The Extra Steps

Last Sunday night, I noticed someone had been sick on my comforter. Probably the dog, since he was in bed with me, but I can’t say for sure. It wasn’t too cold in the apartment, so I threw the comforter off the bed and left it until Monday, when I was working from home. Then I had to time the wash so it didn’t collide with my work. Once it was washed, I hauled it down the hall to the dryer, because otherwise I’d be cold that night. That’s one task on paper. In practice, it was a few rounds of wrestling a heavy, wet comforter, and it used up energy I’d planned to spend elsewhere.

Dishes are the same. When you’re the only one dirtying them, it’s a cup, a bowl, and a few pieces of silverware. That sounds like nothing, but it still takes energy, and it still has to happen. Then there’s the trash. It had to go out a couple of times because of cat litter and my incontinence supplies, and I don’t want that sitting in the bathroom all day. When the bag filled up, I had to manhandle it out of the can and down the hall to the trash chute. Coming back was its own struggle, getting a fresh bag into the can.

None of these are big jobs. But they stack up, and by the end of the day I’ve spent most of what I had. If you read my post on shrimp videos and doing the math, this is the same idea. Every task draws from one pile of spoons, and a comforter or a trash bag comes out of the same pile as everything else. Preparing ahead helped, but it can’t make the pile bigger.

Work Doesn’t Pause

My job isn’t physically demanding. I sit at a computer for eight hours a day processing things, and compared to a lot of work, it’s fairly easy. But it takes focus and attention to detail, and you can’t do either well on an empty tank.

These past couple of weeks haven’t been slow at work. They’ve dragged. I was spending my energy at home, so by the time I sat down at my desk, I was already running on fumes. There were several days I wanted to call it a day, go home early, and just relax. That’s the part people don’t always see. The energy I use on a comforter or a trash bag in the morning is the same energy I need for a 2 p.m. stretch of detail work. It doesn’t refill in between.

Two Games, Two Weekends

Jason is away for two weekends, and both have a Minnesota United game. The first was a Saturday evening match. I went. I’d had the day to rest, and it was in the 70s and low 80s, which is about as kind as Minnesota weather gets for sitting outside in a wheelchair.

The second weekend’s game was midday Saturday, kickoff at 3:30, and the temperature was in the low 50s. I skipped it.

The cat threw up on Jason’s bed Saturday morning. I could have left it. Jason isn’t back until Tuesday, and it would have been there waiting for him. But I didn’t want to leave it, so I stripped the blanket and sheets and ran them through the wash, the same routine as the comforter the week before. Then the dishes were starting to pile up in the sink, and I wanted things clean. By the time everything was finished, it was 1 o’clock. I had little energy and even less enthusiasm for a game that started in two and a half hours, in the cold.

Nothing was wrong in the way people usually picture “can’t go.” I just had nothing left. The first weekend, I had rest and good weather, and I went. The second, I had neither, and I stayed home. Same fan, same team, different pile of spoons. I’m writing this on Saturday afternoon, during the match I skipped. That’s not a complaint either. It’s just what the math looked like today.

Coming Home

Jason gets back Tuesday, October 20, while I’m at work in the office. He’s told me plainly that he expects the house to be messy. That’s not how I roll. I want him to walk in to a clean home with as little waiting for him as possible. I’m also thinking about a Target delivery so there’s real food in the fridge when he gets home, and I already have a small premade meal delivery scheduled for that Tuesday, just four meals. After that, I’ll probably pause it.

Some of that is love, and some of it is just who I am. But it’s also the same math. Cleaning now, ordering ahead, and letting delivery carry the grocery run are all ways of spending spoons on purpose, so I’m not spending them on a bad day. He’s back Tuesday, but the gap in my hours runs until November 1, and this is how I’m trying to make that stretch easier for both of us.

What I’d Tell Myself

I’ve been pushing through. I haven’t asked anyone for help, and I haven’t left work early, even on the days I wanted to. I got the comforter washed, the trash out, and everyone fed. But I also skipped a game I’d been looking forward to, so pushing through wasn’t free.

Here’s what I keep coming back to: I had time to prepare, and I still ran low. I don’t know what that means yet. Maybe it means the preparing only goes so far. Maybe it means I should have asked for help sooner.

I haven’t figured that out. I do know this: the support I get isn’t a luxury. It’s what lets me spend my energy on the things I care about, like work, games, and my own home.

Pushing through isn’t a badge of honor, and it isn’t a failure either. It’s what I did with the energy I had. What I’m asking for isn’t for the work to go away. I’m asking people to understand what it costs.

On Tuesday, Jason will walk into a clean apartment. The dishes will be done, the litter box fresh, the trash out, and my clothes washed. From the outside, it will look like nothing happened. From the inside, that’s what running on fumes looks like.

How do you pace yourself when you’re the only one holding things up?

10/18/26
RJ Mitte, and What We Don’t See
Content note: This post talks about suicide and suicidal thoughts, including my own experience. If that’s not where you are today, save it for another time. No pressure.

If you need support right now:
- Call or text 988 (Suicide & Crisis Lifeline), or chat at 988lifeline.org
- Text HOME to 741741 (Crisis Text Line)
If you’re in immediate danger, call 911.

I found out Tuesday while scrolling Facebook. I’m not on social media much anymore, so I only catch things sporadically, and this was one of those moments where the news just landed. RJ Mitte died Monday. He was 34. He had cerebral palsy and used his own experience to inform his role as Walt Jr. on Breaking Bad. His representative confirmed he died by suicide. The investigation is still ongoing, so I’m not going to speculate about why. I don’t know, and neither does anyone else writing about this.

There’s already a flood of coverage trying to explain why. Some of it comes from unnamed sources, and I’m not going to repeat it. Nobody gets to be the final word on what was going on inside someone else. What I can say is that suicide is almost never about one thing, and we honor people better by not reducing them to a headline.

What I do know is what he meant to a lot of us. He was one of the first people I ever saw on television with cerebral palsy. I don’t remember exactly when I started watching Breaking Bad, but I thought it was really cool that there was a character with CP on the show. I remember when Walt Jr. got his driver’s license and his first car, and I thought that was pretty cool too. Before that, I didn’t see many people like me on screen, if any.

RJ was an ambassador for many organizations, and he put that into action here in Minnesota. On October 22, 2025, he visited Can Do Canines in New Hope to begin a partnership with our own service dog organization. He toured the facility, watched an assistance dog demonstration, and spent time with Tiff, a client who also has cerebral palsy, and her mobility assist dog, Tucker. He told reporters this wasn’t just a pet, it was “a partner.” I didn’t get the chance to meet him, and I wish I had. But it was awesome that a Hollywood celebrity chose to come to Minnesota and support a cause that matters so much to people like me.

I’m not writing this from a distance. I’ve lived with depression most of my life. I didn’t get a diagnosis until I was an adult and started seeing a psychologist regularly. In high school, I had suicidal thoughts, and I came close to acting on them. Something stopped me. I don’t know if it was an angel, a presence, or just a tiny voice in the back of my head, but I didn’t do it.

The next day, I told someone. A trusted person at school. I didn’t have polished words. I just said it, and they sat and listened. That’s all they did, and it mattered more than I can explain. They helped me through some very difficult times after that, and I’m forever grateful.

Living with a disability can make the hard days harder. Part of it is the struggle to do simple, easy things. Yesterday I got an Amazon package and had a hard time opening it. I ended up getting the scissors. It’s not having the same access as able-bodied people. It’s not being able to get in a car and just go. It’s planning, organizing, and coordinating just to do simple things. It’s exhaustion, it’s being overlooked, it’s all of the above. People with disabilities also face a higher risk of depression and suicidal thoughts, and that deserves more honesty than it gets.

So what helps me? People. Friends who have disabilities, and being able to talk to them. I also see my psychologist on a regular basis, just to check in. Sometimes we talk about the important things we’ve been working on for six months. Sometimes we talk about really cool things that happened in the last week. Both count.

I’m sharing this because it can happen to anyone. It can happen to famous people like RJ, and it can happen to people nobody has heard of. Success, visibility, and advocacy don’t make someone immune.

If you’re struggling, know that you’re not alone. I know that sounds cliché, and you hear it a lot, but it’s the truth, and it’s important that you hear it. It’s important that I say it, period.

I don’t want to turn RJ’s death into a neat lesson, because there isn’t one. But I don’t want us to quietly move on either. If you’re carrying something heavy, you’re not weak and you’re not a burden. Tell someone, even if it comes out clumsy. If someone tells you, you don’t need the right words. Sit and listen, like that person did for me.

If you want to honor RJ’s legacy in a practical way, Can Do Canines is always looking for volunteers and donations. You can read about his visit in their post and in WCCO’s coverage.

If this brought something up for you, the 988 information is at the top of this post. Please use it.

Who is your “trusted person,” or who could be? I’d love to hear in the comments, if you’re up for it.
10/14/26
Apartment Hunting While Disabled: The Real Barriers

Where It Started

I’ve lived in my current apartment for over 17 years now, the longest I’ve ever stayed anywhere. When I first moved in, I knew right away it was the place for me: big, spacious rooms and a huge window I fell in love with. But the truth is, this place didn’t come from careful searching and comparing options. It just happened to fall in my lap at the right time. And that’s not always how it goes.

That’s the part I want to talk about, because it’s something a lot of people never have to think about: apartment hunting while disabled is a completely different process.

The Missing Checkbox

When you’re searching listings, there’s no checkbox or toggle switch that says “wheelchair accessible.” Some buildings will advertise “wheelchair access,” but that phrase can mean almost anything. It might mean you can get into the building. It might mean you can get into a unit. It doesn’t tell you whether that specific unit is actually accessible: whether it has a roll-in shower, whether the counters are low enough to roll under, whether the doorways are wide enough for your chair to fit through at all.

You don’t find any of that out from a listing. You find it out by calling. By asking. By hoping whoever answers actually knows the details of the unit and isn’t just guessing. That’s the struggle I run into, and one I know a lot of other wheelchair users and people who use mobility aids run into too. It’s a lot of extra legwork for something that’s simple and easy for people without mobility issues. They can filter by price and location and move-in date and be done with it. We have to build in an entire extra layer of research just to find out if a place is livable for us at all.

Why We’re Still Here

That reality is a big part of why I’ve stayed put for 17 years even as my current apartment has started to show its age. Right now, as I’m writing this, it’s 81° in here and 77° outside. Every year around lease renewal time, I think about looking for somewhere new. And every year, I come up empty, because I haven’t found anywhere else that checks all the boxes this place does: wide doorways, a roll-in shower, room to get under the kitchen counter. Those aren’t extras for me. They’re the baseline for whether a place is even usable.

Add cost on top of that. Our rent with utilities runs somewhere between the high $1,500s and low $1,600s, and accessible units aren’t exactly common at that price point, or at any price point, really. So even when I do work up the will to look, the pool of options I’m choosing from is tiny compared to what a non-disabled renter would see for the same budget and the same city.

Location Isn’t Just a Preference

Beyond accessibility inside the unit itself, there’s the question of where that unit sits. For us, location isn’t just a nice-to-have, it’s practically its own accessibility issue.

I work in downtown St. Paul, so an easy commute matters a lot to me. It matters just as much for Jason, who is deaf and has low vision. Living downtown means he can navigate the community easily, with everything he needs close and reachable. If we moved further out toward the edges of Minneapolis, ease of getting around could become a real problem for both of us.

One thing I don’t think about often enough until winter hits: downtown is mostly businesses and apartment buildings, and snow removal here is prompt. That’s not always true further out, where clearing sidewalks often falls on individual residents who have jobs and lives of their own and aren’t always quick about it. For someone using a wheelchair, an unshoveled sidewalk isn’t an inconvenience. It’s a wall.

Jason has told me that moving out to the suburbs or the outskirts of Minneapolis would likely leave him feeling isolated, since there just isn’t much around to access on his own. He’d also probably have to give up his job at U.S. Bank Stadium since the commute and the late-night hours would be too hard to manage. Right now, when either of us works a shift there, it’s a six block walk. Simple, manageable, doable in almost any weather. Move away from the downtown core, and that gets a lot harder for both of us. Honestly, if we left downtown, I’d almost certainly give up that job myself, though since I only work it once every three or four months, that loss would sting a lot less for me than it would for him.

Looking Ahead: Driving and Parking

There’s one more piece to this that’s been on my mind lately, and it’s a little different from everything above because it’s not about moving. It’s about staying and what needs to change if I do.

I’m currently in the process of getting my driver’s license, and down the road, I’m looking at getting a wheelchair accessible van. That’s exciting, but it’s also made me start paying a lot closer attention to something I hadn’t thought much about before: parking.

At my current building, I’ve noticed people parking in the access aisle, the striped-off space next to an accessible spot that’s supposed to stay clear so a wheelchair user has room to load and unload. Every so often, someone parks in the handicap spot itself without a permit. Right now that’s an annoyance. Once I actually own an accessible van, it stops being an annoyance and becomes a real problem, because that access aisle is the difference between being able to get my chair in and out of the vehicle or not.

I honestly don’t know yet what the parking garage situation looks like for accessible spots, how many there are, how they’re monitored, or how seriously it’s enforced. As far as I can tell, the garage doesn’t actually have any handicap parking at all, which means that’s a separate conversation I’ll need to have with management.

I have already brought up the access aisle issue with management, and I haven’t heard back. It’s still happening. Cars parked in the aisle, no response, no fix. That’s frustrating on its own, and it doesn’t exactly build confidence about how a future conversation about garage accessibility would go. This has genuinely become a factor in the “stay or go” decision, right alongside accessibility, cost, and location.

It also ties back into the location question from earlier. If we ended up moving to the outer ring of Minneapolis or out to the suburbs, I’d likely become a lot more reliant on driving myself and on Jason driving, instead of being able to walk or roll most places the way we do now. Which means parking access, both at home and everywhere else we’d need to go, would matter even more than it already does.

Necessities vs. Nice-to-Haves

There’s another layer to all of this that I keep turning over in my head: the difference between what I need and what I want.

Wheelchair accessibility isn’t negotiable. That one’s not up for debate. But beyond that baseline, I have a whole list of “would be nice” items. A second bedroom. A washer and dryer in the unit instead of a shared laundry room. A balcony or a patio. Those are perks, not necessities, and I know it.

The problem is that most wheelchair accessible units aren’t going to check all of those boxes. Accessible units are already a small slice of what’s out there, so once you start layering on extra wants, that slice gets even smaller. Which raises a real question: would I be willing to give up some of those nice-to-haves for the sake of finding something that’s actually wheelchair accessible? Almost certainly, yes.

But it also raises a harder question, one I don’t love sitting with: would I be willing to compromise on some of the necessities instead? Would I settle for a unit that’s only partially accessible if it meant I finally got a balcony or an in-unit washer? I don’t think I have an answer to that yet, and honestly, I’m not sure I want to find out the hard way.

Lots of Questions, Not Many Answers

So we’re kind of stuck. I think what we need to do is head into winter and really sit down to figure things out. Do we actually want to move? Can we afford to? If we did move, where would we even go, and what would we be looking for? Would we be willing to give up some of the roughly 750 square feet we have now for a better location or better features?

I don’t have this figured out yet. But I do know that whatever we decide, the search itself is going to take a lot more calls, a lot more questions, and a lot more patience than it would for most people. For us, “accessible” and “livable” and “close to everything” all have to line up at once, and that’s a much smaller circle than most renters ever have to think about.

Have You Been Through This?

I’d love to know I’m not the only one wrestling with this. If you use a wheelchair or another mobility aid, how did you go about finding your current place? Did you have a system for vetting units before wasting time on a tour that turned out to be a dead end? Are there resources, websites, or local organizations that actually helped you cut through the guesswork?

I know accessible housing resources exist out there, but I haven’t found one yet that felt built for someone in my exact situation, balancing accessibility, affordability, and location all at once. If you’ve found something that worked for you, or if you’re in the middle of this same search right now, I’d genuinely like to hear about it. Drop a comment or reach out. Let’s compare notes.

08/26/26
Why Can’t Pants Just Fit?

Let me set the scene. I am in the bathroom, getting ready to do what one does in the bathroom, and I go to pull down my pants. Except I don’t really pull them down. They just slide. Right off my hips, no effort required, like they were waiting for an excuse.

My first thought was that I had grabbed a pair that were too big. It happens. I lost a significant amount of weight a few years ago and had to size down, and some of my older pairs are still floating around in the rotation. But no. I checked. Same size as my newer pairs.

Which brings me to a question I have been asking for years: why can’t a size just be a size?

Here is the thing about my wardrobe

Most of my clothes come from the boys department.

My shirts and pants, mostly from Target. My underwear, from JCPenney. A few adult shirts here and there, but adult sizing tends to run big and boxy, or long in the body and the leg, and none of that works great when you spend your day in a wheelchair. Boys sizing fits my body better, and there are real reasons for that.

I am not especially tall, and I have a slim waist. My hips are another story: cerebral palsy has affected my hip joints over the years, and that has shaped my proportions in ways that make standard adult sizing a poor match. I also prefer shirts that hit just below the waist or near the hips, which makes dressing easier day to day. Adult cuts tend to be too long, too wide through the chest, or both. Boys sizing, more often than not, actually fits.

I want to be clear about something, because I know where some people’s minds go when they hear that. Shopping in the boys department does not make me childish. It does not make me immature. It means I found clothing that fits my body, which is the entire point of clothing.

Most of what I wear, you would never clock as coming from the boys section. A plain tee is a plain tee. A pair of jeans is a pair of jeans. Do I have a few shirts with something a little more fun on them? Sure. But the majority of my wardrobe could pass in either direction without anyone batting an eye.

I am just a person wearing clothes that fit. Novel concept.

So about that sizing problem

Here is where it gets frustrating. Boys sizing runs differently than adult sizing, and I have made my peace with navigating both. What I have not made my peace with is that boys sizing is not even consistent with itself.

A boys size 18 is a youth size, not an adult one. But that number does not mean the same thing from one brand to the next. I actually keep a reference chart just to keep track, not because I enjoy doing extra homework before buying a pair of pants, but because the numbers mean so little on their own that I genuinely need it. A boys size 18 at Target fits differently than a boys size 18 at JCPenney. Same number, two different brands, two different fits. And that is before you factor in that sizing can shift within the same brand from one year to the next.

The number on the tag is not a measurement. It is a suggestion. A rough estimate. A vibe.

If I buy a size, that number should reflect an actual measurement. The same measurement, every brand, every year. The fact that it does not is not just inconvenient. For a lot of people, it means clothes that do not fit, returns that are a hassle, and a shopping experience that already takes more effort than it should.

And it is not just pants

For a long time, shoes were their own separate nightmare.

I wore AFOs for years. AFOs, or ankle-foot orthoses, are rigid braces that support the foot and ankle and are commonly used by people with conditions like cerebral palsy. They slip inside your shoe, which means your shoe has to be big enough to accommodate both your foot and the brace. My true foot size is a men’s 8. But for most of the years I wore AFOs, I was buying a men’s size 10 just to make them work. The last pair that actually fit over my braces were a pair of Doc Martens at a size 10. They did the job, but finding them was not easy, and shoe shopping was never simple.

I stopped wearing AFOs a few years ago. That is when I found out what size my feet actually are.

There is another wrinkle worth mentioning. Because of my cerebral palsy and the fact that I do not bear weight the way most people do, unless I am in the middle of a transfer, my feet do not sit flat. That makes it difficult to get an accurate measurement in the first place, which adds yet another layer to an already complicated process.

Eventually I found Billy Footwear, and things got a lot better. Billy’s designs shoes that zip open fully around the sides, making them genuinely easier to put on for people with a wide range of mobility needs. For the first time, I was buying shoes in a size that actually reflected my feet, not my braces, not a workaround. I receive no compensation from Billy Footwear. I just think they are worth knowing about.

But the point is: I spent years buying shoes two sizes too big because the alternative was not having shoes that worked. That is not a sizing inconsistency problem in the same way pants are. That is a whole different failure of the system. And it is exhausting to navigate both at once.

For wheelchair users, the stakes are a little higher

Back to those pants sliding off my hips in the bathroom.

That moment was funny, in the way that a lot of disability moments are funny when you are not in the middle of a transfer. But it is also not nothing.

I cannot count the number of times I have been mid-transfer into my chair and had to stop and readjust because my pants had slid down. Transfers require focus and coordination. Having to pause and hike your pants back up in the middle of one is not just annoying. It is a real disruption, and depending on the situation, it can affect your safety and your dignity.

I could wear a belt every day. Sure. Except a belt is not just something I forgot to grab. It is time and energy, and when you are a wheelchair user who needs to get to the bathroom in a hurry, that time and energy is not always available. A belt between you and the bathroom can be the difference between making it and not making it. That is not a minor inconvenience. That is a real problem.

Here is the thing, though. Most of my pants, because they come from the boys department, are either pull-on or they fasten with snaps rather than the buttons and zippers you find on adult men’s pants. That actually works in my favor. Both Target and JCPenney carry adaptive clothing lines, and I have tried a few things from each. But for my needs, regular boys department basics do the job just as well, often with the same easy-access features that adaptive clothing is designed around, and without the premium price tag. The boys department accidentally solved a problem the adaptive clothing industry charges extra to address.

Which makes the sizing inconsistency even more frustrating. When you find a department that fits your body, fits your budget, and happens to have features that make your daily life easier, you want to be able to rely on it. A boys size 18 should mean the same thing every time. It does not. And that matters.

A size should be a size. Every brand. Every year. Every time. It is not a complicated request. It just, apparently, is not how the industry works.

And until it does, I will be in the boys department at Target, checking the tag on every pair of pants, and hoping for the best.

Does inconsistent clothing sizing affect how you shop? I would love to hear how other wheelchair users and disabled folks navigate this, whether it is keeping your own reference chart, finding brands that actually work, or something else entirely. Drop a comment below.

06/06/26
When the Bus Doesn’t Pull Up: Advocating from the Back of the Bus

So this actually happened last Saturday, and I’m just now sitting down to write about it because life has a way of doing that. But it’s been living rent-free in my head all week, so here we go.

Jason and I went to the Minnesota United game. Simple enough, right? Except it wasn’t.

The green line was down for maintenance, so Metro Transit had shuttle buses running between downtown Minneapolis and downtown St. Paul. Shuttles on game days tend to get packed, so we decided to skip it and just take the 94. I take the 94 to work most days. I know the 94. The 94 and I are old friends.

Or so I thought.

Going: When the Bus Just… Doesn’t

When the 94 pulled up to our stop, it didn’t actually pull up. It stopped in the street. The driver leaned out and shouted that he was full, that he couldn’t accommodate me.

Does that happen? Yes. Is there much I can do about it in the moment if a driver says the bus is full? Not really. So I took him at his word. Everyone else at the stop stepped off the curb and boarded. Jason and I watched the bus go.

We ended up taking the green line shuttle after all. We made it to Allianz Field just in time for kickoff. I was a little annoyed, but the game was good, and I shook it off. Soccer helps.

Coming Home: A Different Story

After the game, I figured the shuttle would be the easy option heading back. It was not easy.

The shuttle loading area was right next to where a CVS had been torn down a few weeks earlier. Construction barricades were everywhere, and they were blocking the sidewalk. I couldn’t get through. I couldn’t load onto the shuttle. Just like that, the “easy” option was off the table.

Since I don’t usually take the 94 from downtown St. Paul, I wasn’t entirely sure where it picked up. Cue some finagling, some frustration, and, honestly, a little aggravation on Jason’s part too. But we found it.

This Time, I Spoke Up

Here’s where it got interesting. The same scenario played out: the bus wasn’t pulled to the curb. But this time, I decided to speak up. A little louder. A little more firmly.

The driver seemed to think I was just going to hop off the curb into the street. Power wheelchairs do not hop curbs. A few people nearby offered to lift me. They meant well, genuinely. I politely declined. One wrong move and someone gets hurt, I get hurt, or my chair gets damaged. None of those are great outcomes.

The driver eventually maneuvered the bus to the curb and loaded me on. I don’t know if he was having a rough day. Game days are chaotic, the green line was down, and everyone was stressed. I get it. But it still needed to happen, and it happened because I asked for it to happen.

Oh, and then the bus had a mechanical issue and had to pull off on the freeway. Which has genuinely never happened to me in all my years of riding Metro Transit. So that was a thing.

Even Advocates Need a Nudge Sometimes

Here’s what I keep coming back to: even those of us who do this work, who talk about disability rights, who know our rights, who have the language, sometimes freeze up in the moment. Sometimes we’re tired. Sometimes we’re just trying to get home after a long day and we don’t want to make it a whole thing.

I needed a gentle nudge from Jason to speak up on the way home. And that’s okay. Advocacy isn’t a switch you flip on and it stays on forever. It takes energy. And sometimes it takes a partner, literally or figuratively, reminding you that you’re allowed to take up space.

Even if that space is at the back of the bus, waiting for the driver to pull six feet closer to the curb.

We got home. Minnesota United lost 0-1 to LAFC. And I’m still thinking about that ride.

Have you ever frozen up in a moment when you knew you needed to speak up? What helped you find your voice?

As for today: no bus rides on the agenda. Minnesota United is playing the Columbus Crew in Columbus tonight at 6:30, so I’ll be watching from the couch.

Good thing too, because Metro Transit is doing more maintenance on the green line this weekend. Shuttle buses again. I’ll be staying home, thanks.

05/02/26
Grieving the End of The Things We Leave Unfinished

I finished The Things We Leave Unfinished yesterday. At work.

And then I sat there staring at my computer screen for a solid five minutes, headphones still in, not moving, because I genuinely did not know what the hell had just happened to me.

Eventually I took my headphones off, got up, and took the dog for a walk. Because what else do you do? You can’t just go back to trying to focus after that.

You can’t.

The dog didn’t know why we were suddenly going outside, but he didn’t ask questions, and I appreciated that.

Rebecca Yarros. If you’ve been anywhere near #BookTok in the last couple of years, you probably know her from the Empyrean series, Fourth Wing and everything that followed. That’s how I found her too.

And if you’re part of the disability or chronic illness community, there’s a good chance she hit you a little differently than she hit everyone else.

Yarros has Ehlers-Danlos syndrome. She’s talked openly about it, and she built that lived experience into the Empyrean series through her protagonist Violet, whose chronic illness is woven into the story not as a plot device, but as just part of who she is.

For a lot of us in the disability community, that kind of quiet, matter-of-fact representation is rare enough to stop you in your tracks. It stopped me. So I already trusted this author with something before I ever picked up The Things We Leave Unfinished.

I thought I was prepared for what she could do to me.

I was not prepared.

Dual timeline. WWII love story tangled up with a present-day one. If you know, you know. If you don’t, go read it, and then come back here, because I need to talk about it with someone who’s been through it.

A note before we go further: this post has vague spoilers. I won’t be laying out plot points in detail, but if you’re good at reading between the lines, you may be able to piece some things together. You’ve been warned. Go read the book first.

Seriously.

Go.

This Isn’t the First Time a Book Has Done This to Me

The last time a book wrecked me like this, I was sitting on my aunts’ kitchen floor.

I was in college. I had been over to their place with the last Harry Potter book, told them I couldn’t leave to go back to my dorm until I finished it, and proceeded to plant myself on the kitchen floor and read. For what felt like hours. Deeply, completely, embarrassingly immersed right up until the last page turn.

And then I just sat there. On the floor. Not ready to leave that world. Not sure how to go back to normal life after living so long inside that one.

That’s a particular kind of loss, not just the end of a story, but the end of a relationship with a story. The kind that’s been woven into actual years of your life. I filed that feeling away, figured it was specific to Harry Potter. To the scale of it. The years of it.

And then yesterday happened.

The Normal Kind of Grief

There’s a particular hollow feeling that shows up when you finish a book you loved. It’s not sadness exactly, or it is, but it’s mixed up with other things. The story was still living in my head all day. I’d think about a scene between Scarlett and Jameson and feel warm about it, the way you do, and then remember: oh. There’s no more. That’s all there is.

I miss the characters. Not in a hedged, I-know-they’re-fictional kind of way. Just, miss them. Full stop. I spent hours living alongside these people. I knew how they talked, what they were afraid of, the way love looked for them under impossible circumstances. And now they’ve stopped existing in any new way.

That’s the ordinary grief of a good book ending. I know it well. But this one had something extra.

The Revelation Kind of Grief (Here’s Where It Gets Vague)

There’s a specific kind of hurt that comes when a story delivers a revelation near the end that reframes everything you thought you knew. Not a trick. Not a cheap twist. The kind that’s been earned, slowly, carefully, and lands with a weight that almost knocks you flat.

That’s what happened near the end of this book.

I found out something about a character I had loved, trusted, and grieved alongside the whole time, something that changed who I understood her to be. Entirely. The character in the book who receives this news reacts in a way that mirrored exactly what was happening in my chest in that moment. I felt it right alongside her.

The grief doubled. I had to mourn the version of the character I thought I knew. Then mourn the truth. Then sit with the fact that the truth was, in its own way, even more heartbreaking than anything I’d braced for.

It’s a strange feeling, retroactive grief. Going back over everything in your head through a new lens. Realizing the sacrifices were bigger than you understood. The losses, deeper. The love, somehow even more devastating for it.

And I’m sitting at my desk at work going: holy crap. What the hell just happened.

The Audiobook Factor

Here’s the thing I didn’t fully account for going in: I listened to this book. And the narrator had a fairly decent English accent for the historical timeline: Scarlett, the letters, all of it. Which sounds like a small detail, but it wasn’t.

There’s something about a voice in your ear that collapses the distance between you and a character in a way that reading off a page doesn’t always do. I wasn’t just reading about Scarlett and Jameson, I was hearing them. Their world had a sound. And when that world ended, it didn’t just close like a book. It went quiet. All at once. In my ears.

One second I’m in WWII England. The next I’m just… at my desk. Staring at a screen. Surrounded by the ordinary sounds of my ordinary day. The whiplash of that is something else entirely.

Returning to Real Life, Reluctantly

Coming back to real life after a book like this always takes a minute. A story is its own world with its own weather, and you get used to that weather. Real life doesn’t have the same architecture. Problems don’t resolve by the final chapter. The pacing is all off.

Sometimes you need a walk. Sometimes you need to sit on your aunts’ kitchen floor for what feels like an hour. Sometimes you need to stare at your computer screen until the feeling settles enough that you can breathe normally again.

All of those are valid. All of those are just what it looks like when something got through.

That’s What a Good Book Does

I think the grief I’m carrying right now is actually a kind of gratitude in disguise. You don’t grieve stories that didn’t matter. You don’t lie awake thinking about characters who didn’t get under your skin.

This one got under my skin. So did Harry Potter, all those years ago on that kitchen floor. And I think I’m glad, genuinely glad, that I’m still capable of feeling it. That a voice in my ear, telling me about people who never existed, can send me out the door mid-workday just to walk it off.

The things we leave unfinished. Not just in the novel, but in the feeling it leaves behind. Some books close and you’re done. Some books close and you keep carrying them for a while, working something out.

This is one of those.

I’ll be okay. I just need a few days and probably something lighter to listen to next. (Suggestions welcome. Something with nobody dying would be great, thanks.)

Have you ever finished a book, or an audiobook, and just needed a minute? What sent you to the floor? Come sit with me.

Oh, and one more thing, because the universe apparently isn’t done with me yet: Lionsgate recently announced they’re adapting The Things We Leave Unfinished into a feature film. So I’m going to need a minute to process that too. If you need me, I’ll be on the floor.

05/01/26
You Only See a Snapshot: That’s Not Enough to Judge
Scroll through Facebook on any given day and you’ll find it: a parent sharing a moment with their child, and buried in the comments, a pile-on. Someone calling them lazy. Someone asking why they haven’t “fixed” it yet. Someone offering unsolicited advice wrapped in thinly veiled judgment.

It happens constantly in disability parenting spaces. And it needs to stop.

The People I Follow And Why This Matters to Me

I want to be clear upfront: I follow a lot of autistic people and autism families on Facebook, and I do it because they’re genuinely worth following. The autistic people I know personally are cool, funny, thoughtful, and totally normal.

They are just navigating a world that wasn’t really designed with them in mind. The families I follow online are doing the same: showing up every day for their kids, sharing the good moments and the hard ones, and being more honest about their lives than most people are willing to be.

Some of those families have kids with severe autism. And some of those kids are in diapers or pull-ups. When I see that, I don’t see failure. I see a family that’s figured out what works.

When strangers on the internet see it, sometimes the reaction is very different.

What People Don’t Understand About Severe Autism and Potty Training

Potty training isn’t just about learning a habit. It involves sensory awareness, the ability to recognize and interpret body signals, motor coordination, communication, and the executive function to stop what you’re doing and act on that signal in time. For kids with severe autism, any or all of those pieces may be genuinely, neurologically difficult, not because no one tried, but because the wiring works differently.

For some kids, traditional potty training isn’t a realistic goal at least not on anyone else’s timeline, and maybe not ever in the conventional sense. Pull-ups and diapers in those cases aren’t a sign that parents gave up.

They’re often the result of years of trying, working with therapists, adjusting approaches, and ultimately landing on what actually preserves the child’s dignity and the family’s ability to function.

When someone fires off “have you even tried potty training them?” in the comments. They’re not helping. They’re showing how little they understand about what that family has already been through.

Pull-ups and diapers aren’t a sign that parents gave up. They’re often the result of years of trying, working with therapists, and ultimately landing on what actually works.

I Have Some Skin in This Game, Too

I’m not writing this from the outside looking in. I have cerebral palsy. CP affects muscle coordination and spasticity throughout the body, and for me, that includes my bladder.

What that looks like in real life: there’s sometimes no gradual warning. One moment everything is fine. The next, my bladder is spasming and I have a very short window, sometimes no window, to get to a bathroom. It’s not a matter of planning better or paying more attention.

That’s just how spasticity works.

So yes, I use pull-ups. It’s practical. It’s smart. I’ve made my peace with it and I truly don’t care what anyone thinks.

I’m sharing this not to make the post about me, but because I want to be honest: I understand something about making practical choices around a body that doesn’t always cooperate. And I understand what it feels like to have those choices be nobody’s business but your own.

You’re Only Seeing a Snapshot

Social media gives you a moment. One frame from a film that’s been running for years.

You don’t see the context. You don’t see what was tried before. You don’t see the appointments, the therapy sessions, the late-night research, the hard conversations, the small victories that don’t look like anything to the outside world but meant everything to that family. You don’t see the grief, or the resilience, or the way a parent has quietly rewritten their definition of progress a hundred times over.

What you see is one post. One photo. One moment.

And yet that’s enough for some people to render a verdict.

What to Do Instead

This isn’t complicated. It just takes some intentional effort:
- Pause before commenting. Ask yourself: does this person need my input, or did they just share something from their life?
- Ask instead of assuming. If you genuinely don’t understand something, curiosity is more useful than criticism.
- Believe people when they say something is hard. You don’t have to fully understand a situation to respect that someone is doing their best in it.
- Amplify instead of critique. If you see a disability parent or a disabled person sharing their reality honestly, share it. Normalize it. Help build a space where people feel safe being real.
The World Could Use More of This

My original thought was simple: if there were more people willing to support instead of judge, the internet — and honestly, the world — would be a better place.

I still believe that. Disability doesn’t come with a handbook, and every family’s path — every person’s path — looks different. The least we can do is show up with some grace for the moments we don’t fully understand.

You only see a snapshot. Make sure the story you’re telling yourself about it is worth telling.

Written by someone who knows this isn’t theoretical. 💙
04/12/26
When the Season Shifts

When I first became a soccer fan, I never thought much about the weather. It was just part of the experience. The game and I have evolved. I’ve started thinking about how changing seasons shape what accessibility really means for fans like me. Changing bodies also influences this meaning.

I’ve been reading about Major League Soccer’s proposed move to a fall–spring schedule. I understand the reasoning behind it. Still, I can’t help but think about how it will change the fan experience. This is especially true for those of us who feel the seasons differently than we used to.

When I first became a fan back in 2015, the cold didn’t bother me. I was just excited to be there to feel part of something alive and electric. I remember going to a game one chilly October and bringing one of my aunts along. She thought I “looked cold,” even though I swore I was fine. By halftime, she’d bought me a hot chocolate, a hat, and maybe even a sweatshirt.

I still remember that small act of care. The steam rose from the cup. Her laughter cut through the cold air. I didn’t think much of it then. Yet, looking back, I realize it was one of those simple, human moments that stay with you.

A couple of years later, at our first home game in MLS, the weather turned on us fast. Heavy snow fell throughout the match, thick, wet flakes that clung to your eyelashes and soaked your gloves. The snow was coming down so fast that they had to use leaf blowers to clear the lines.

My toes went numb halfway through, but it didn’t matter. The atmosphere was electric, the crowd united in equal parts misery and joy. We were there together, and that was enough.

Those were different times. I was a different person. I was more willing to push through the discomfort just to be part of the moment.

These days, I’ve noticed that the same weather affects me differently. I attend fewer matches as temperatures drop, and this year I didn’t opt in for playoff tickets at all. It’s not that my passion for the team has faded far from it. It’s just that Minnesota’s fall weather is unpredictable. This unpredictability makes it hard to plan. I find it difficult to feel confident that I’ll be comfortable or safe. The wind cuts a little deeper now. The cold lingers a little longer.

Supporting a team with an outdoor stadium like Allianz Field comes with that territory. Still, it’s made me think more about what “accessibility” really means. We often talk about it in physical terms, ramps, seating, transportation, and those things matter deeply.

Accessibility can also mean something softer, more personal: being capable of participating fully without discomfort, fear, or exhaustion. Weather affects this aspect, particularly for fans with mobility challenges. It impacts those with chronic pain or other health conditions, making the cold more than just an inconvenience.

For some fans, colder games are part of the charm. They enjoy layers of scarves and hands wrapped around coffee cups. There is a sense of endurance that becomes almost a badge of honor. But for others, it’s not that simple. The cold can turn joy into endurance, and that can change the whole experience.

As I’ve grown and my needs have shifted, I’ve noticed some changes. I’ve started to see how sports, something built on togetherness, can sometimes overlook the quiet ways inclusion matters.

The fan experience isn’t just about ticket sales. It isn’t solely about crowd energy either. It’s about whether everyone can share in those moments equally. That’s true for people of all kinds.

This includes those experiencing changes due to age. It also includes people with disabilities, sensory needs, or simply changing bodies who experience the world differently than before. Accessibility isn’t one-size-fits-all, and weather adds another layer to that reality.

I still love this sport, this team, and the community it builds. Soccer has been a steady thread through so many seasons of my life, literally and figuratively. But my relationship to it has evolved as I have. The same stands that once made me feel unstoppable now remind me to listen to my body. To respect its limits. To show up in ways that make sense for where I am now.

If MLS does move to a fall–spring schedule, I hope clubs and stadiums will think creatively. They should consider what that means for all fans.

Maybe that looks like expanding covered seating in some venues. It could also mean improving heat access. Or it could simply involve offering more understanding around accessibility options in cold weather. Sometimes inclusion begins with small acts. It could be a staff member who notices. It might be a space to warm up. Or it could be the willingness to ask, “What do you need to feel comfortable here?”

For many of us, being a fan isn’t about braving the elements anymore. It’s about connection: to the game, to the people around us, and to ourselves. It’s about finding warmth in community, even when the temperature drops.

Seasons shift, people change, and that’s okay. What matters most is finding warmth in the stands. We need warmth in the community. It is essential in the spaces that still make us feel like we belong.

11/12/25
When School Safety Plans Leave Students Behind
I wasn’t sure how much more I was going to say about the recent school shooting at Annunciation Catholic School. But then I stumbled across an article in the Minnesota Star Tribune, and it stopped me in my tracks.

We practice drills in school—lock downs, tornado, fire—because safety matters. I remember those drills vividly from my own time in elementary school. My experience was never quite like my classmates’.

During tornado drills, everyone crouched on the floor, arms covering their necks. Me? Still sitting upright in my wheelchair, because that was the safest option we had.

Fire drills were even more complicated. I remember a specific instance when the alarm went off. No one was sure if it was a drill or the real thing. Elevators can’t be used in an actual fire, but that day, there wasn’t time to debate. A staff member just scooped me up and carried me down three flights of stairs. I sat on the grass outside without my chair until we got the all-clear.

I applaud that staff member for their quick thinking in getting me out of the building. I also applaud the Annunciation staff. They pulled a student out of his wheelchair and shielded him with their bodies. Those moments were heroic—but they were also unplanned. They happened because people acted on instinct, not because the system had a clear, inclusive plan.

The Hard Truth: Our Plans Have Gaps

Yes, emergency procedures can be written into IEPs. Many do. But let’s be honest—you can’t plan for every scenario. Right now, too many schools are failing to plan for some of the most basic ones.

Here’s the reality for students with disabilities:
- They may not be able to flatten to the ground during a lock down.
- They may not move as fast as their peers—or at all—when evacuating.
- They may not cognitively understand what’s happening in the chaos and could unintentionally move toward danger.
These are life-or-death gaps. And yet, they’re rarely talked about until tragedy strikes.

What Minnesota Requires—and Where It Falls Short

Minnesota law requires schools to have comprehensive emergency plans, and those plans are supposed to include students with disabilities. Best practices suggest:
- Individual Evacuation Plans for students who need them
- Accessible alerts for students with hearing or vision impairments
- Specialized evacuation equipment, like stair chairs
But in practice, these things don’t always happen. Many schools still:
- Skip individualized drills because they’re time-consuming
- Lack staff training for evacuating students with disabilities
- Depend on instinct in emergencies, instead of clear systems
That gap between policy and practice is dangerous—and it needs attention now.

The Bigger Picture: Gun Violence and Safety for All

I’ve said this before and I’ll say it again:
- We need common-sense gun reform.
- We need mental health screenings.
- We do not need weapons of war on our streets.
I support the Second Amendment. I support responsible gun ownership. But firearms designed to fire dozens of rounds in seconds have no place in civilian life. They exist for one purpose: destruction.

Until laws change, we live in a reality where lock down drills and emergency plans are essential. That reality must include every student.

What Needs to Happen Now

We can’t just design safety for the majority and leave the minority behind. Here’s what schools should be doing now:
- Individualized Safety Plans for every student with mobility, sensory, or cognitive disabilities
- Regular drills that include students with disabilities (not afterthought drills)
- Evacuation equipment and staff training to make sure no one is left behind
- Collaboration with first responders so they know how to assist students with disabilities during real emergencies
Why This Matters

I hate writing about this. It breaks me to even think about it. But ignoring it won’t make it go away. These conversations matter because too often, we design for the majority and leave the rest to fend for themselves.

It’s time to change that. Every student deserves a clear, safe path in an emergency. No exceptions.

We can’t wait for another headline to have this conversation. Start it now—because safety should never be optional.

What You Can Do Today
- Ask your school if students with disabilities have individualized safety plans.
- Talk to your school board about inclusive drills and evacuation equipment.
- Advocate at the state level for stronger accountability and resources for schools.
Resources for Parents and Advocates
08/31/25
Trapped Without a Voice: Elevator Safety for DeafBlind Residents
Surley and I had quite the eventful morning.

We started off with our usual walk through downtown Minneapolis and along the Loring Greenway. It was a beautiful day. We stretched our legs a little further and wandered through Loring Park. It looks strikingly different without the usual Pride festivities filling every inch.

Then we crossed the Irene Hixon Whitney pedestrian bridge over Interstate I-94, Hennepin Avenue, and Lyndale Avenue. I stopped to snap a picture of Surley, who was looking particularly dashing in the breeze.

Surley on the bridge.

We entered the Sculpture Garden after rolling off of the bridge. This brought on a wave of memories. I remembered the time my Aunt Kate took my sister and me there one summer during a visit. She capped the trip off with Sebastian Joe’s ice cream, which triggered an instant craving. Nostalgia always knows where your sweet tooth lives.

It had been a few years since I’d been there so I looked up the address on their website. I discovered they had affogato on the menu, espresso over ice cream, and that was it. We were going.

After a few minor detours thanks to road construction in the area, classic Minnesota summer, we made it. I ordered affogato with chocolate peanut butter ice cream. Unexpectedly bold and delightful. Then I spotted the chocolate chip cookies and, well, you know how that goes.

Chocolate, peanut butter, espresso is a deliciously dangerous combination.

Cue: emergency mode.

So there I was cookie in one hand, affogato in the other, soaking in the calm of a summer morning…

…and then my phone buzzed.

“help i am stuck in elevator”

At first I was a little confused. It was random and out of the blue. I sent a follow up message seeking clarification. When I didn’t get a response, I sent another message. After not hearing back for about five minutes, I started to get worried. This was outside of his normal behavior.

Jason managed to send another message with a few more details. He was stuck between the basement and first floor of our apartment building, where cell signal was weak. The elevator’s emergency call box was no help—unsurprising, given that he’s Deaf and has low vision.

He also sent a brief video. From that, I called 911 and explained the situation: a Deaf and low vision person was trapped in an elevator. I let them know the office was closed and no one was answering the phone. Thanks to the video, I could tell the dispatcher exactly which elevator he was in and where it had stopped.

Quick PSA: Many counties in Minnesota, including Hennepin, support text-to-911. It’s a good choice for folks who can’t speak or hear during emergencies. But not everyone knows it’s available, and it doesn’t always work well underground.

Once help was on the way, I woke Surley from his nap on the cool tile floor and jogged home.

Surley napping on the cool tile floor at Sebastian Joe’s.

Poor Surley, tongue lolling and tail wagging, worked hard to keep pace. He trotted beside me as we walked home at mach 10 like a champ.

By the time we returned, Jason had just gotten out with help from the fire department. He was headed to the store with a friend. He was okay: hot, sweaty, but safe.

Afterwards

Later, we sat down. We talked through everything that had happened. The more I heard, the more disturbing the story became.

Jason had taken the elevator down to grab some things from his storage unit. When it stopped in the basement, the doors didn’t open. He tried hitting the “door open” button. Nothing. He attempted to go back up to the first floor. He swiped his fob for access to his floor. Still nothing.

Because of his low vision, he had trouble seeing what floor the elevator thought it was on. There were no audible cues. He pressed the emergency “help” button. He wasn’t sure whether it activated. The indicator was too small and hard to see. He backed up further and got on his knees. Only then was he able to see the blinking red light. He used text-to-speech on his iPhone. He said, “I’m Deaf, stuck in elevator.”

He also tried live captioning on his phone to transcribe the audio from the speaker. He hoped it would tell him that someone was on the line. No matter where he placed his phone nothing came through clearly enough to be transcribed into words. Even though he is deaf, he can hear static and muffled sounds when using his hearing aids. However, he cannot make out words in detail.

He stayed surprisingly calm, even though his hands were shaking, which made texting and filming difficult. He immediately noticed somewhat bright yellow light just below the floor display. It was a fire dept override. This reassured him that the fire department was here. It put him at ease that they were working to get him out.

Eventually, the fire department and an elevator tech arrived and got the doors open. Jason had to step up about a foot to climb out: hot, rattled, and understandably frustrated. But he was, in his own words later, “unfazed.” (Though I think he was being generous with himself.)

Surley resting in the AC after the day’s events.

After the dust settled, I spoke with our apartment manager.

I explained why I called 911. They told me I should’ve left a message on the office line. They assured me they would have responded promptly.

Now look I get the desire for tenants to follow procedure. But here’s the thing: there was no one in the office. No one answered the phone. The voicemail simply said, “Leave a message for maintenance emergencies.”

This wasn’t a dripping faucet. A Deaf and low vision resident was stuck in a sealed metal box. There was no clear way for him to call for help. He was starting to overheat. I wasn’t about to wait and hope someone checked their voicemail.

If I hadn’t answered his text message what would’ve happened? How long would Jason have waited?

He pushed the “help” button in the elevator. He was using text-to-speech to relay a message. Did the dispatcher realize they were speaking to someone who couldn’t hear them? Was the dispatcher aware of the communication barrier? Did they think it was pressed by accident? Would they have done anything?

I didn’t want to find out the hard way. So I called 911. And I’d do it again.

But it raises some real concerns.

People with disabilities are often left out of emergency planning. Even when the systems are technically in place, they don’t always work when you truly need them. This includes systems like text-to-911 and live captions.

WWYD (What Would You Do?)

So, I pose this question to you:

If you were in my shoes…
Would you have called 911?
Would you have left a voicemail and waited?
Would you have done something else?

Let me know in the comments. If you live in an apartment building, especially one with older elevators, take a minute. Check what your emergency plan looks like. Talk to your neighbors. Learn your options.

Because accessibility shouldn’t depend on luck. It shouldn’t hinge on a single person being available to answer a phone. It should be built in — thoughtfully, thoroughly, and proactively.

Call to Action

If you didn’t know about text-to-911, now you do. Check your local county’s website to confirm it’s available where you live. Share this post with someone who might not be aware. Accessibility starts with awareness.

Resources
07/09/25