Last week, I met (for the first time) the surgeon who will be doing reverse replacement surgery on my left shoulder.

Because I have a pretty unusual genetic skin disorder (epidermolytic ichthyosis) I was trying to tell him, as quickly as possible, the aspects of my condition that are unique. He had already made a point of saying that he had never operated on anyone with my skin condition. Still, he really wasn’t listening.

In terms of the surgery itself, perhaps the most important thing (and potentially the most time consuming thing) is that I am a very “hard stick”. A person who is a hard stick is someone for whom it is very difficult to find a vein. Several times (75% of the time I think, would not be an exaggeration) it has taken over an hour to start a line on me.

I told him, and he kind brushed me off and said “tell your anesthesiologist.” (He might have well have said, “tell it to the Marines”.* He talked over me a lot, partly because he had an assistant there taking notes for him.

This guy is supposed to be really good at doing shoulder surgery, or I might think about getting a different surgeon. I’ve had both hips replaced in the past, and I had a wonderful surgeon for those surgeries—although he didn’t really believe me about the difficulty that was likely with getting my IV started until he experienced it, and it threw off his whole surgery schedule that day. (I miss you, Dr. JL.)

I make it a point to not lie to my doctors, and to not exaggerate symptoms. I do that because I think it’s my best interests. Since most doctors don’t initially know shit about my skin condition, one hopes that they will at least give me the benefit of the doubt when I am trying to explain it to them.

I do not play the pity card on these occasions, partly because 1) I almost never play the pity card; 2) the pity card has the potential to really undermine your credibility.

The reason that I mention all this is the thing that surprises me when I encounter this sort of professional disinterest is—well—I will turn 69 in October, and while everyone thinks that they are “special”, I am genuinely very unusual at least. And, while I know that doctors now have woefully little time to spend with each patient, I am someone whom I would be interested in and curious about, just from a human point of view. (As in, “wow, I bet her life was really different than mine.”)

In a professional capacity, I served students with a wide range of disabilities for almost 30 years. I know how you can easily get to the point where you feel like you’ve heard it all before. But, because of my own life experience, I know that there are people whose lived experience falls far outside my own —either because of the nature of their disability, or because of how they have chosen to deal with it. Or both.

This doctor was as pressed time as any doctor these days, but he could have taken an additional five minutes to actually listen to me—which would probably have benefited him as much as it would me.

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I find subscriptions encouraging—particularly the paid ones. Knowing that people are seeking out more from me, and actually find something of value in what I have to say is all any of us are actually looking for, isn’t it? I think that even those writers who are trying to make their writing a source of serious income are also seeking the validation that subscriptions bring.

I have lowered my subscription price to $2.50 a month. A “sale” price that will last until at least until the end of this federal administration. (We’ll see what happens after that…)

I appreciate you hearty subscribers—free or paid—who have been sticking with me through my periods of inactivity. I do see you. And, I appreciate every “heart” and comment.

*I don’t know where this expression comes from, but I like it! I think of it as an old school version of “talk to the hand.”

Flashbacks

When I was eight or nine, and in special ed, I got a new physical therapist. Mr. G was very enthusiastic and wanted me to try a bunch of different things for exercise.

Keep in mind that with my epidermolytic ichthyosis, I was/am very easily injured. If I fell, if I was sharply bumped—big boo-boo. A large amount of my top layer of skin would just come off. This was much more dramatic than a kid scraping their knee. When this happened, it hurt like a bitch, but I was also at a greater risk of a skin infection.

One of the things the PT wanted me to try was riding a regular bike with training wheels. I had never wanted to ride a bike because I knew that if I tipped over, which was virtually certain as far as I could tell, it was going to be big boo-boo city. It was only a matter of time until I tipped over. I tried to tell him that I didn’t want to ride a two-wheel bike, but he thought I was just resisting exercise in general. The PTs I encountered as kid usually medicalized (or worse, psychologized) any objections I might have to an activity; it was a rarity when they could see that I had a point.

Additionally, I think that adults see a child with a physical disability and think, “I bet little Suzy wishes she could ride bikes with the other kids. Nah. I was wishing for a wheelchair.

After riding the bike around inside the therapy department for a little bit, he made me take it outside and ride it on the playground. (Our playground was asphalt, with lots of little tiny rocks.) In my memory, I went a few feet—maybe 50 feet. Terrified the whole time.

Eventually, I had a hysterical fit. Not because I was hysterical, but because I didn’t seem to be able to get his attention otherwise. I told him how injured I would be (pretty sure I told him this before) if I even had a minor fall. I told him that it wasn’t worth it to me to ride bikes. He finally seemed to hear me. The bike experiment was over.

I was not one to have crying fits at school (or anywhere, for the most part.) Eventually, I found out that because I was so stoic usually, when I did have an emotional outburst, the adults paid attention.

In the Present 

The other day, I had to go for an MRI for my left shoulder. I have a torn rotator cuff, in addition to arthritis. I had already met with a sports medicine doctor, who told me if the MRI confirmed his suspected diagnosis, that the best course of treatment would be a reverse shoulder replacement.

When I got to the MRI department, I checked in with the front desk person who was extremely nice. After a while, she took me into a changing room. It was large because it was wheelchair accessible, and she said you’re going to have to change into a gown.

I said, “No.” I said, “ I don’t have any metal on, and it is very difficult for me to change my clothes.“ She said, “I will go and check and see what they say.” I thanked her; I knew this was becoming a pain in her butt.

The receptionist came back carrying a gown and underwear (weird paper underwear). She apologetically told me that they were insisting on me changing. I told her in very even tones that I really didn’t want to do that, and that I really didn’t think it was necessary. She then offered to bring out one of the techs. I thanked her again and off she went.

The tech came out, and he was carrying the gown and underwear. I could tell that he immediately processed the fact that there was something really wrong with my skin. I told him that I realized that this was protocol, but that I didn’t think it was necessary.

He told me that some fabrics have metal in them and I could get burned. I thought for a second and then said I know this is protocol, but I really don’t think it’s necessary. I reiterated that I was not wearing any metal.

The tech was a young man, in his mid to late 20 I’m guessing. He bent down and kind of whispered to me, “I can’t give you permission to not change. I’m new here and I’ll get in terrible trouble.” Then he offered to bring his supervisor out and I said, “Oh, thank you, that would be great.”

When the supervisor came out, he was a guy somewhere between 35 and 45. I am probably projecting, but I felt as though he was mentally running through what he was going to say, and how was going to deal with this difficult patient. (Because that’s what I would have been doing.) He took one look at me and said “Oh.”

I said “I was born with epidermolytic ichthyosis. I understand changing clothes is your protocol, but if I do that, I’m going to get skin everywhere. I was careful not to wear any metal and I really don’t think changing is necessary.”

K, the supervisor, immediately said, briefly feeling the cloth of my pants, “Is this cotton?” I said that it was. I said again that I wasn’t wearing any metal—no zippers, no metal fastenings.

K then said, “I think we can make an exception for you.”

I told him I would really appreciate that. 

I was so incredibly relieved. Changing clothes is not the hardest thing in the world for me, but it is uncomfortable. And I do drop skin everywhere. Little flakes; sometimes I call myself the snow queen. I had been prepared all along to have to change my clothes. But I really believed that it was completely unnecessary, and I thought that it was a protocol for which they had no built-in exception process.

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My husband had come with me because, when I talked to the department on the phone, arranging the appointment, they were totally freaked out by the idea that I was coming in a wheelchair and that I couldn’t necessarily get on the table by myself. During that phone call, they decided to use a Hoyer lift* for me. It took an effort for me not to laugh because we’re talking about a “lift” of maybe three or 4 inches, at most.

K said, “What if we bring the table out to you?” I said, “That would be great! I didn’t know you could do that.” The last time I had gotten an MRI was about four years ago, and at that time I was able to step on a step-stool to get up onto the table, which I thought was part of the machine. I did need to have somebody stand there in case I lost my balance. Now, I’m much less certain about my ability to step up without assistance.

They helped me, the two techs and my husband, to get up onto the table. It was just about as high as a lot of hotel beds are, which is to say too high for me. Except for some steadying, I really got myself up on the table. My method is to get out of my wheelchair, and turn so that my butt is up against the table. Then, when I’m sure my weight is on the table, I put my foot or feet on the seat of my wheelchair, which is steel with a cushion. I lever myself up. No Hoyer lift needed.

The rest of the appointment was pretty typical as far as I know. They wheeled me into the machine, and positioned my left shoulder. I think I was in about half an hour, and what was moderately uncomfortable at the beginning was hurting like a motherfucker by the end. I understand that this is totally not their fault; it is simply the process.

When it was over, they wheeled me back out to the changing area, and I got back into my chair. I made a special point to thank each of them—the receptionist, the tech, and Keith, the supervisor, for being flexible and understanding my need for an accommodation. I didn’t frame it as them doing me a favor. Rather, I tried to imply that they did the sensible thing.

The fact is, that there are probably many situations in which it is difficult or uncomfortable for a patient to change clothes and change clothes back, and for which it’s not necessary. I know the protocol was probably approved by the lawyers, but they should have a process where the changing of the clothes doesn’t have to take place. You shouldn’t have to be the snow queen to get that accommodation.

Tired, But Elated 

I was so proud of myself for the way I handled the situation. I didn’t get angry, I didn’t play the pity card, I just stuck to my story. Where my life experience informed how I dealt with the situation was in knowing from my old job how many things were “protocol“ and how often we made exceptions. In my old office, we were serving students with disabilities, so it only made sense that we were constantly making accommodations. But we started with the premise of a standard operational procedure, so that what we did was consistent.

We kept a record of everything we did. When we made an exception (an accommodation) we documented why we made that accommodation. We did this so if we were challenged legally, we could defend why we treated this student this way, and another student that way.

My understanding and my experience, of how we had to operate in my old office, informed how I approached my situation with the MRI. In my old office, my direct reports were empowered to make exceptions of their own volition. If they felt, however, that it was a borderline situation, it would be taken up to the next managerial level. Which, to a great extent, was exactly what happened at the MRI department.

I mentioned before, that I was completely prepared to have to change my clothes (twice). And then I would’ve gotten skin all over everywhere, just as I said I would, which would’ve been a whole different kind of pain in the ass for them. 

The transfer onto the table would’ve happened more or less the same way, except that I would’ve felt less secure in a gown and weird, ill fitting underwear. Most of the time, I feel that my clothing offers me a little protection from bumps and scrapes. Minor bumps and scrapes. Anything more than that and I’m losing a top layer of skin. Now that I’ve gotten older, my skin is more fragile, and minor injuries are more likely.

If I had had to change my clothes, and, if I had had the energy, later, I might’ve written a letter suggesting that they needed a better policy about when they made accommodations for patients with disabilities. I’m not talking about physical energy, but more emotional energy. After 60 years, the repetition of these situations is wearing. And though I feel uniquely able and qualified to introduce people to the ideas of accommodations, if it’s my job, I want to get paid for it. 

As if.

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Did you know that I can’t really tell if you read my post unless you click on the heart at the bottom of the post? I found out that “hearting” a note or a post isn’t supposed to be an indication that you think it was the best thing you have ever read, it’s more of a “I read this.” That’s why I click on the heart for almost everything I read on Substack. It also works if you are reading the post that you received by email, or so they tell me. ❤️

*A Hoyer lift is a pretty big piece of equipment. There’s sort of a sling that they get under you, and the hydraulic lift raises you from one place—and then they swing you over to where you need to be, and they lower to the designated spot. I was not confident that they could get the sling positioned without hurting me, and “my” way was much faster.

Gratuitous cat picture, requested by multiple fans. Wesa is helping to make the bed, because she is good like that.

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I am sorry it has been so long since I have written. Time gets away from me. I am often composing posts in my head, but that’s about as far as I get. I think if I got back more comments from you (or at least a click of the heart to know you read one of my letters) I might feel that I wasn’t just howling into the wind.

I have signed up as an Amazon associate, so if you ever click on the link for a product I have posted about, I might get a tiny commission—it doesn’t add to the cost for you. I have done this once before, on my old blog, and it didn’t come to much, but it made me feel like I was of this century. I also don’t post about anything that I haven’t used and liked.

I find subscriptions encouraging—particularly the paid ones. Knowing that people are seeking out more from me, and actually find something of value in what I have to say is all any of us are actually looking for, isn’t it? I think that even those writers who are trying to make their writing a source of serious income are also seeking the validation that subscriptions bring.

Sometimes, I get really tired of living in this body

I think I have said to you before that ever since I was a little kid, I have lived much more in my head than in my body. Not quite talking head in a jar, but definitely on that spectrum. Even on a good day, I had some degree of discomfort, so escaping into a book, or a tv show, or a movie, or a crafting project really helped me disassociate from my bodily bothers.

From when I was little, to well into my adulthood, I had significant pain from blisters on my feet, pretty much every day. Nobody thought about pain meds or a wheelchair, so it just hurt, every day. I guess I have some residual bitterness about all of the clueless adults whose inaction allowed this to happen, but I try to remember that epidermolytic ichthyosis is so rare, no one had really thought about treating the discomfort—they were too busy treating how it looked.

Anyway, I think that was when I started to disassociate from my body—although, at the same time I was hyper vigilant about activities, trying to not get injured (“skinned”).

As I’ve gotten older, the sources of discomfort have changed—osteoarthritis in my hips and knees, and most recently, in my shoulders. I am most pissed about the pain in my shoulders, as it has arrived on the heels of my having figured out how to minimize the mobility-related discomfort.

I had my first shot into one of my shoulders a couple of months ago and it really helped a lot. Unfortunately, I tweaked that shoulder about a week ago, and it is too soon to get another shot. It’s my left shoulder that is the most painful, and it has made me realize how ambidextrous I am! It turns out that I use my left arm and hand all the time, even though I am right handed. (I remember my mother commenting, when I was little, that I was ambidextrous like my father’s mother, who died before I was born. She had very painful arthritis, and died from internal bleeding caused by taking so much aspirin.

So anyway, as Roseann Rosannadana said, “It’s always something.”

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Zoom

A while ago, I told you about my still newish ramp van:

I love this van! I love the seats that turn, although I still need practice in getting the seat in the optimal position to turn it without scraping the wall of the van behind it. Please note, this is a me problem and not a failing of the modified seat.

The other problem with the seats is also a me problem—I am pretty short and the neck rest is just not adjustable to a comfortable place for me. So, after a little trial and error, I found this:

https://amzn.to/4uYAdJV

My husband puts it on either the driver’s seat or passenger seat for me, and it seems to be pretty easy to switch. I’ve only used it on this one trip so far, but it worked great for my neck strain.

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CCRCs

We recently took a trip to Southern California to visit a few CCRCs (Continuing Care Retirement Communities). Why SoCal? Because they are about half the price of any potential options here in Northern California. I found one I liked quite a bit—I guess it’s not a coincidence that they also seem to be the most disability-accommodation friendly. Out of the four we looked at, only one seemed to be up to speed in their legal obligation to provide accessibility under the ADA provision covering businesses open to the public.

It will be interesting to see what happens when we get to the application process. There’s a financial component and a health component. The bottom line is they really want you to move in when you don’t need much in the way of services. That describes us, right now. So, waiting until you’re really getting to the point of needing a lot of services/help is going to limit the places that will accept you. Also, one of the places we looked at in Carlsbad, CA, had a waiting list of 6-10 years!

It is worth noting, I think, that all of the CCRCs that we have looked at so far are pet-friendly—they didn’t bat an eye at our two indoor cats.

Cora is the black and white one, and she has the softest fur I have ever felt. Wesa is the tortie, and is a little more tweaky than Cora. We adopted them from a small cat rescue, shortly after the worst of Covid. The rescue insisted that kittens were adopted as a pair, so we did. The adoption application rivaled my law school application. They are seen here sleeping on my husband, who swears he only really tolerates the cats for my sake. Uh huh.

Did you know that I can’t really tell if you read my post unless you click on the heart at the bottom of the post. I found out that “hearting” a note or a post isn’t supposed to be an indication that you think it was the best thing you have ever read, it’s more of a “I read this.” That’s why I click on the heart for almost everything I read on Substack. It also works if you are reading the post that you received by email. ❤️

Until next time, be well. (If you can’t be well, be a little ornery.)

Context is Everything

I am very aware when I am writing about life with a disability, I am way outside the demographics for most people with disabilities, particularly for those with severe disabilities who are around my age (68). I try to point this out to help set the context for everyone, because I don’t want people to think that I forget how privileged I am.

• Advanced degree (JD—American law degree) This is almost unheard of for most Crips my age because our early education was so shitty if we were segregated into Special Education schools. Climbing out of and beyond that metaphorical ditch took a ton of luck.

• Financially secure (depending on what disasters might happen with the government.) This is due to an inheritance plus saving as much as I could (plus an employer match) for 27 years.

• Currently I can pay for help I need that is not covered by insurance. I actually probably need more help than I’m getting (not a lot, and a nuanced thing), but it isn’t for lack of funds.

• I can buy the things I need to be comfortable, but I don’t always know what those things are. My mother did not want accept change in her home as she aged, and didn’t want to spend any money toward anything that might make her more comfortable. (Example: I bought one of those lift recliners about a decade before she did, even though she had fairly severe osteoarthritis. She didn’t want to change her current furniture, and she really didn’t want to spend the money. She ended up virtually living in that chair for several years.)

With all that in mind, here is one of my recent experiences.

Hotels

This bit actually starts in another post, where I describe staying in a hotel in Bakersfield, California.

In Las Vegas, I stayed at the Aria, where I have stayed several times before. Their Crip rooms are pretty big, and they have—not as a disability accommodation, I think all the rooms have this—a room control system linked to a tablet, from which you can control the lights, the curtains, and TV. You can also order room service and make reservations in the restaurants in the hotel.

.The downside of Aria’s Crip rooms is that the beds are too high. I had used their website to request that the bed be lowered. (This is often accomplished by removing the box springs.) I called the front desk and asked if the bed could be lowered, and the conversation that ensued was just irritating: I should have called and not relied on their website; he couldn’t make a note of my request now, I would have to call back in the morning. It occurred to me that they probably had a record of every penny I had gambled, in every affiliated hotel, plus a record of every past stay, but whatever. I never called about the bed again, having a I just-don’t-want-to-deal moment.

There is stereotype of the whiny crip who asks for everything they can get, whether they really need it or not. And another of the all-suffering crip who never asks for anything, because they’re “so brave” that they’ll take whatever they can get and make do, and they are sooooo grateful. (“God bless us, everyone.”)

A bigger demographic that gets little to no attention is my group, which is just tired. Tired of the hassle-factor of disability. Tired of being calm and polite and reasonable in the face of ableism, or just that old garden variety laziness or stupidity.

In 2022, I developed debilitating pain in my arms and shoulders. After several months of doctors’ visits and an MRI of only my left shoulder (?), even though the pain was in both shoulders, my doctor’s best guess was that it was a combination of torn rotator cuff and osteoarthritis arthritis (which, by this time, several months after the pain started, was much better.) After discussing various treatment options, including shoulder replacement and cortisone shots, we agreed to take a “wait and see” approach.

I mention this here because on the morning I was to leave Vegas, my neck, shoulders, and upper back were causing a lot of pain—enough pain that I didn’t think I could do a four hour drive back to Bakersfield. I called my husband, and we agreed that I shouldn’t attempt to come home until the pain had abated, at least to a manageable extent.

I went to the front desk, and a young man named Gabriel listened to my problem and found me an accessible room that I could check into immediately. Huzzah! My luggage was still at the bell desk, and my van was still in the parking lot, so presto, I was saved.

My next task was to get a heating pad I could use for my neck and shoulders. On a whim, I called the Concierge. She was helpful, and told me that I could get DoorDash to bring me a heating pad from CVS. This scenario happened pretty much without incident, except that the DoorDash person was 45 minutes later than she said (of which I was notified in two minute increments on the app) and I was supposed to meet her in the lobby. Eventually, I got a text saying that the driver had dropped off my order at the bell desk (which was outside, so I couldn’t observe it taking place from my watchful station in the lobby.)

I ended up spending most of that day and the next in bed with the neck/shoulders heating pad on, taking anti inflammatories.

A “funny” scenario occurred on the first of my rehab nights.

I had ordered room service, and the menu said that my order would be packed like a to-go order, and would be left outside my door. While I was waiting, I was futzing with the charger cords for my tablet and my phone. Just as I had both cords looped around my neck, with the other ends plugged into an adapter, an insistent knocking began at the door. I hollered, “just a minute,” to which the knocking (and eventual pounding, no lie) became even more pronounced. In desperation, I pulled the charging adapter out of the wall, and went to the door with everything tangled all around me. (I was actually really lucky that I didn’t wreck my wheelchair or pull an Isadora Duncan.)

Standing there was a uniformed, weirdly grinning woman, 35-45, with a bag holding my food.

I said, “It says on the menu that the food would be left at the door, so I wasn’t expecting anyone.” Thank god I was fully dressed.

“Oh,” she said, shit eating grin only slightly faded.

There was a nearby shelf, and I asked her to leave the bag there. She put it where I indicated, and ONLY THEN did it seem to register with her that I was sitting in front of her in a wheelchair.

The shelf where the food now rested came up to my shoulder, and she asked, “Are you going to be able to handle that?” I said, “Yes! Now, get the fuck out!”

I didn’t really say that last part. Sadly, I am brainwashed for politeness.

After two days of taking it very easy and not using my arms the pain abated significantly. I checked out, and drove back to Bakersfield, to the Courtyard.

The EEEEEE alarm sound came back after I stopped for gas in Bakersfield, before going to the hotel. I started the van and there it was. See the link below for the beginning of the trip.

When I got to the Courtyard, the power doors in the van weren’t working and so the ramp didn’t deploy. (This turned out to be my fault. In my wild eyed effort to make the EEEEEEEEE alarm stop, I had randomly pushed quite a few buttons. One of them turned off the power doors. Oops.)

I opened the side door manually, and deployed the ramp, manually. This isn’t fun for me, but it isn’t that difficult. It doesn’t take much force to deploy the ramp manually, which is why I prefer this particular style of Crip van modification.)

The next day, I drove home, deploying the door and ramp manually. I had the EEEEEE to keep me company. I will wrap up this story in Hotels #2, to be posted soon.

(I asked Unsplash for a picture of gloom.)

I am a Good Student of my 68 Years of Experience

I started following a couple of Reddit groups a couple of years ago. There is one for my specific disability, ichthyosis. There is another for disabilities in general.

I wrote the below combination advice and rant for someone who has been asking what I consider preliminary questions about having a disability (or multiple disabilities.)

I’m pretty sure that I saw your first post about advice for things you can do when you’re stuck at home. I also think I understand why you might find knitting “strenuous”.

I have been “severely” disabled all my life. I was fortunate in some ways, and was able to get appropriate mobility aids which enabled me to work full time for many years. My disabilities were mostly about ambulating and chronic pain for a long time. As I aged, I developed osteoarthritis.

I always imagined that when I retired, I would spend time knitting and doing paint by number, and maybe even weaving. Then, about three years ago, I started having debilitating pain in my shoulders and arms. Any activity led quickly to pain. So after many doctors’ appointments I eventually got a diagnosis of the arthritis being in my shoulders, and probably also a torn rotator cuff. A doctor told me I should consider a shoulder (or both shoulders) replacement. I would, but I am concerned that I wouldn’t be able to do the rehab. So I try to stay within my new limits. It is really difficult, but it’s that or have another flare that holds me up for weeks.

You used a phrase I haven’t heard before, “low support needs.” This may be a new term. I think of disability as occurring on a spectrum of severity, and each of us can travel that spectrum within any given day or week.

How the government thinks about it is to what extent can you perform independently your ADLs—Activities of Daily Living. ADLs can cover everything from getting dressed and bathing, to light cooking, shopping and housework. To get SSI or SSDI, you do need medical documentation and if you have a condition that is not on their list of conditions that are by definition “disabling”, you will very likely have to go through multiple submissions of documentation and multiple appeals.

Unless you are very fortunate, as I currently find myself, you may always struggle to find adequate financial resources to pay for the types of assistance you need at any given time in your life. The government’s best support is measurably below the poverty level.

This level of almost-but-not-really-adequate support epitomizes the pervasive ableism that still dominates our society as whole. I thought that this not-so-warm blanket of ableism might change in my lifetime, at least a little, and maybe it has.

But this 2nd DJT administration has and will roll back many of the gains that have been made.

This is, at least on my planet, reality.

I am extremely lucky! In November, I bought a new Toyota Sienna van with a Braun conversion, which includes a powered folding ramp. I also added two Braun seats in the front that turn toward the back, to make transfers from my wheelchair easier.

My last van was a 2008 Honda Odyssey. It was a champ. I looked at Odysseys again, but all the conversions I saw had ramps that are mounted under the van and deploy at the push of a button. My completely data-free feeling is that having it mounted under the van could make it more susceptible to breaking. My old school folding ramp can be deployed manually, which I find practical and comforting.

So, I decided to drive to Las Vegas. When I was younger, long drives were no biggie to me. I love driving.

It’s about an eight hour drive, so I split it up over two days, and spent the first night in Bakersfield. At about the three hour point, I stopped at the first Rest Area that was open; all the other ones were closed, which I found very sad. I had a snack, and was back on the road in about fifteen minutes.

Except… All of a sudden, I had a loud warning alarm going “EEEEEEEEEE” when I started the car. I investigated everything I could think of—none of the idiot lights came on to tell me what was wrong. “EEEEEEEE” It only went stopped when I turned off the van. I made the decision to continue on to Bakersfield—I figured if it was a safety issue, there would be an idiot light or a message to tell me what was wrong. (This Van alerts you if it thinks you’re not holding the steering wheel adequately. Seriously.)

(I use the term “idiot lights” in a term of art sense, not as a pejorative.”)

So I drove to Bakersfield with my loud companion. “EEEEEEEE”

My stay at a Courtyard hotel in Bakersfield was uneventful. I decided I would stay there on the way back. At this Courtyard, the front desk people double as the barista and the bartender, etc. I had already ordered a latte from the barista, and told her that I wanted to make a reservation for the same room. I said, “The room is pretty accessible—except the bed is too high.”

“Oh,” she said.

“Yes, if the bed is too high, it is really difficult to transfer to the bed from the wheelchair. I’m lucky that I can stand up, but it’s still really difficult.”

“I never knew about that,” she said.

“I think removing the box springs would do it.”

She said, “I will look into it.”

To be continued…

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In the morning, I found a Toyota dealership that was open. A nice man walked up to my open window and said, “Can I help you?”

I said, “Can you hear that?”

“EEEEEEEEE”

He listened. I told him my actions up to that point and that I just was hoping someone could tell me what it was and turn it off.

He directed me into a parking space, and proceeded to spend about fifteen minutes trying to help me. He was respectful and polite and I never felt that he was at all condescending. I was pleased that all the things he checked were the ones I had already checked. He was also mystified by the absence of Toyota idiot lights.

Ultimately, we decided it had to be an alarm from my adaptive equipment, not from the van itself. We were about to give up—I was resigned to the idea of driving the rest of the way with “EEEEEEEE”, because finding a vendor—I should say finding an experienced vendor of adaptive equipment for cars on a Sunday in Bakersfield would be impossible. (To be clear, I don’t think I would have been able to find one in the Bay Area either, not on a Sunday.)

Freddy—I finally found out his name—saw my point. Before I left, Freddy said, “Let’s try all of the adaptive stuff one more time.” So, I showed him how my turning chair worked, and then deployed the ramp. When I pushed the button to store the ramp and shut the door, the alarm stopped.

We looked at each other. I said, “But I used the ramp twice since the alarm started.” He kind of shrugged.

“Well, thank you so much! You’re a genius, even though we don’t really know what was wrong.” He just smiled.

Next, even though I had half a tank, I decided to buy gas, which would necessitate getting help from the gas station.

In addition to parking privileges, service stations must refuel a disabled person’s vehicle at self-service rates unless the service facility has only one employee on duty. (From the California DMV website.)

In the San Francisco Bay Area, where I live, a lot of gas stations display the ♿ on or near the gas pumps, theoretically to indicate that they know they need to help disabled drivers pump their gas.

I never found a gas station in Bakersfield that displayed the ♿. So, I picked one. I looked up the phone number of the station and called them. “Hello,” I said. “I am actually already at your gas station. I have a disability and I am wondering if you have someone who can help me get gas.”

The woman that answered the phone seemed a little surprised. She said, “I have a co-worker I can send out.”

“That would be great,” I said. I described the van for her.

A nice young man came out and was very pleasant, polite and efficient.

My strong impression was that neither the woman on the phone nor the guy that helped me had any idea that they were legally obligated to perform this service for me. I think that they just did it to help me, because I asked.

I had never stayed in Bakersfield before. All of the people I dealt with were great, and didn’t act weird because of my disability. No condescension or talking really LOUDLY like the wheelchair robbed me of the ability to hear. Big thumbs up. 👍

I want to note that I could not find, listed anywhere—not on Google or Yelp—a full service gas station, which is actually my preference. They will do your windshield, and even check your oil—hence “full service.” I bet, especially now with the aging boomers, there is a big market for full serve options at gas stations. There used to be one a couple of towns away from me on the Peninsula; I think they charged ten cents a gallon more for the full service option and it was totally worth it. Every time I went there one or two other drivers would come for this service. They would also just pump the gas for you at the self-serve pump with no additional charge.

I loved those guys, but they retired a couple of years ago. It was a family business, and I’m guessing that the next generation didn’t want to be in the gas station and car repair business.

Next up — checking into the hotel.

One thing I learned at my old job (at a university providing services to students with disabilities) is that a lot of the students with disabilities had multiple disabilities.

Keep in mind, if an individual has a learning disability, cerebral palsy, and food allergies—that’s multiple disabilities. As that individual gets older, they may acquire additional disabilities, age related disabilities, etc.

I began life with one major disability, epidermolytic ichthyosis. I write a lot about that in this post:

As I have gotten older, I have acquired additional disabilities—bonus disabilities if you will. They include osteoarthritis and chronic depression. (I read a study of ichthyosis patients done in Sweden (I think, one of those Scandinavian countries. One of the data points they mentioned was that it was very common for ichthyosis patients to also have depression.)

I only got treatment for depression (and for physical pain, for that matter) when I became an adult. My mother didn’t really have any interest in anyone in our family getting treatment for mental health issues, so we just didn’t. Ditto pain management.

Fast forward to the beginning of the Covid years. I had been working at my old job for twenty-five years or so. I had had a series of bad bosses for two decades—needless to say, this experience exacerbated my depression.

By this time, I had appropriate pain medication, depression meds, a power wheelchair and a wheelchair accessible van. (The van was one hundred percent paid for by me.) The only downside of these accommodations to my disabilities, was that I frequently (once a year or so) had to engage in long, drawn out battles with my insurance company to get the meds and equipment for my permanent disability.

Sometimes it is Just One Disability Too Many

During the work-from-home Covid period, I developed pain in both arms and shoulders, that took forever to get diagnosed—a combination of the osteoarthritis and screwed up rotator cuffs. I went on short-term disability, and got to experience a new kind of insurance company incompetence.

Years before, I had been on temporary disability a couple of times (first one hip replacement and the other.) In the early 2000s, my employer had been using a different insurance company for the various types of short term disability leave, and I had a great experience with those services.

In the early 2020s, another insurance company had the contract. This company exceeded my most cynical and trepidatious expectations by miles. I had to chase them to record my hours, and my checks were usually late, sometimes by a little, sometimes by weeks. (This shitty customer service was in spite of the fact that my employer had a designated “special” customer service rep just for us.

Every person in my office had difficulty with this company—every single person I spoke with. I was very lucky that by this time, I was no longer living paycheck-to-paycheck, so I was merely inconvenienced by the late payments of my insurance claims. Many people on my staff needed those checks to be on time. About three years before, I would have been in the same position as they were, needing my entire salary every month.

Employees from our department would come to me for advice, and all I could advise them to do was call the phone numbers we were given, and send emails to the appropriate address. As the director of the office, I didn’t have any special access to more senior management who oversaw the administration of our insurance benefits.

Finally, I decided to sort of make a nuisance of myself and I started calling various managers in HR. (This was after I had decided to retire, so I was less reluctant about pissing people off.) It had occurred to me that this continuing failure of the vendor who was contracted for administering our short term disability insurance had a disproportionately harmful impact on employees with disabilities. My reasoning was that an employee with a disability and/or chronic illness (which could likely be characterized as a disability) would be more likely to need to take short term disability leave, depending on the nature of their disability.

Eventually, I had a zoom appointment to tell the manager of short term leaves (within my employer’s HR department) about my concerns. I reviewed for him some of the stories I had gathered from my staff about various snafus that they had encountered, including my own.

I also mentioned that I had had the opposite experience with the previous vendor. I pointed out that I was certain that the snafus weren’t restricted to our department, and asked why they continued to use a vendor that provided such poor customer service.

I even mentioned that I thought there were potential grounds for a class action lawsuit by employees with disabilities who were being disproportionately harmed by the incompetence the vendor. (This was something that had never occurred to him.)

I just wanted him to know that it would only take one smart disgruntled and disabled employee to start a law suit of this nature. Unfortunately, it is my experience that it takes a lawsuit to motivate decision makers to get moving.

After turning on the charm and talking with him about all the ways the situation was bad, I did get some admissions. Someone high up the food chain had contracted with the vendor to provide this type of insurance, and the “fix was in”; just because it was well known that the vendor was woefully inadequate to the job did not mean that they would be replaced anytime soon.

It Always Comes Down To Money, Doesn’t It?

It’s a drug company making a fortune on weight loss drugs, or the health insurance companies that do everything they can to avoid covering those same meds. It’s the insurance companies that pay a 40% (or more) mark-up on DME (durable medical equipment—wheelchairs, walkers, canes, etc.)

It makes me think of the guy on CalTrain who was in a wheelchair for a temporary disability. Typically on CalTrain, wheelchair passengers sit facing each other.

This guy asked me if I had one piece of advice for people who become disabled.

I said, “Don’t be poor.”

I had to get up at 7:30 am this morning to go to jury duty. I realize that 7:30 doesn’t sound that early to a lot of people, but it is for me.

For a lot of reasons, I don’t get to sleep until the wee hours. Itching and/or pain keep me awake. Ruminating doesn’t help. My usual schedule is to wake up when my husband gets up, often at 8:30. I have something to eat, and go back to sleep until around 2 pm. Recently, I faced the fact that this is my norm, and so make my appointments as late as possible—it’s working for me, but jury duty’s schedule is beyond my control.

Last night, I tried to go to sleep earlier, but couldn’t do it. When I finally dropped off, my cat decided it was time to play.

She circles me—my head and torso—for about twenty minutes until she eventually lies down. Strangely, she is always lying down and snuggled up sleeping when I have to get up.

So, I headed out with adequate time to get there, on about two and a half hours of sleep.

I had put the address of the parking garage in my phone, and found it with no problem.

All of the accessible spaces on the first floor were taken, but the crip spots were all near the elevator, so going to a higher floor was not a problem.

After driving around and around on the ramps, I noticed that some of the parked cars I was passing were familiar. Finally, I realized that I was going in circles on the same floor. I was fooled by the ramps going up and down. I laughed at myself while also feeling disconcerted. I hoped I could chalk it up to lack of sleep and not cognitive decline.

When I finally parked and got out to the street, I heard a guy walking by say, “This fucking city.” He looked lost and confused and pissed. Soon, I was confused, too.

I wandered around the streets of the civic center, unaided by the GPS I kept looking at. I can report that the sidewalks there are quite chewed up, and cause a very bumpy ride.

Eventually, I head back to the parking structure, which is on Hedding Street. The building I am looking for is on North First Street. I discover that even though the Superior Court’s address is on North First, its entrance and only building label is on Hedding, almost directly across from the parking structure in which my van awaits me. Just to be clear, the building isn’t at the corner of Hedding and North First—that was at least a couple of other buildings after the Superior Court building.

I was just under an hour of lateness. When I got up to the jury check-in counter, I had already been asked once if I wanted an exemption from jury duty (after a meaningful glance at my wheelchair.) I knew there was an exemption process, which included submitting a letter from my doctor. I hadn’t thought I wanted an exemption, so I hadn’t pursued one.

By this time, thanks to my own folly (the parking garage), an epic failure of GPS, a failure of the city to provide signage for the accessible entrance to the building, me functioning on only one cup of coffee, and sunny but cold weather, I give up. I play the D card (that they had handed me when I got there.)

The jury clerks are eager (really eager!) to give me an exemption from jury duty. The clerk behind the counter says, sotto voce, “I am putting ‘financial’ as the reason.” Since sitting there in my wheelchair is not enough to show why I need an exemption—I needed that doctor’s letter.

Which I actually respect. Just being in a wheelchair shouldn’t prevent me, or exempt me, from being able to be on a jury.

So, now that I know how to get to the fucking building, the next time I get a summons for jury duty, I may do it.

P.S. On my way home, it occurred to me that they never asked for ID. I could have been getting an exemption for someone else. (Which I would not do, by the way, but I could have.

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To Go or Not to Go, That is The Question

I think I first heard about the reunion in May, planned for Labor Day weekend. A friend forwarded an email he had received, and there were also posts from someone who was trying to put the reunion together.

My friend wasn’t going to go, so my decision came down to whether anyone else I actually knew was going to go.

The above black and white is a picture of my graduating class. I have circled me in yellow highlighter. I have no memory of going out on the field to be in the picture.

And here we are today. I’m on the end again. (The DJ said I was a good parallel parker.) Only about a third of the class attended, which seemed pretty good to me for a fifty year gap, but what do I know.

What? I Can’t Hear You

Let’s do some easy math. We graduated in 1975; it was a fifty year reunion. We are all pushing 70.

There was really loud 1970’s pop music playing a lot of the time. Too loud to be heard over. We’re having to yell in each other’s ears to be heard. It was the same at the Friday night event, which was a meetup at a bar in town close to where we went to high school. (Our school was knocked down in recent years.)

Not being able to hear—why did no one ask for the music to be turned down? Were we all afraid to appear to be old and uncool? We are old—though not particularly uncool. I didn’t ask because I didn’t want to play into the complaining crip trope, and nobody else seemed to notice that pretty much no one could hear.

Not Willing To Take a Chance On Access

Before the event, about a month ahead of time, I asked if the venue was accessible. The answer came back that it was, and that the level entrance was in the back.

The accessible door was propped open when I arrived, but when I returned to that door to leave, it was shut and I couldn’t open it. I tried—the door looked pretty old and had a few random screws and nails in it. I it had a panic bar instead of a door knob, and I was hitting it, but I think the door was stuck in it’s frame.

Eventually, I started looking for another door, and was stopped by a cute guy in his thirties. He was a member of the private club from whom we rented the reunion space. I saw him sitting with an older guy who was sitting in a room I passed while looking for an alternative accessible exit.

“Can I help you?” Cute guy said to me. “My friend just said, ‘she shouldn’t be in this hallway.’”

I smiled at him and said, “I was looking for a way out. I found the door I used to come in, but I couldn’t get it open.”

“That’s strange,” he said, turning and going down the hall toward the door in question. “That door shouldn’t be locked.”

Of course, he opened the door easily. “I loosened it for you,” I said. He grinned and gave me a fist bump.

I never checked out the access in the restroom. I didn’t have to go, and was not responsible for a professional report.

Why I Decided To Go

When I was deciding about whether or not to go to the reunion, one thing made the difference. There were only a handful of people that I really was interested in seeing. The Reunion Committee did something really smart. As they sent out reminder emails, they listed all of the people who said they were coming. Most of the people I wanted to see were coming, so that clinched it.

And I did get to see them, and speak with them briefly.

Turns out, it is a kind of awkward conversation to be asked what you’ve been up to FOR THE LAST FIFTY YEARS. One thing that did strike me was that I had done a lot more different things, even just in the realm of work, than most of the guys. I’m not sure why that is—probably a lot of factors play into that.

For one thing, my first real job, at Visa USA, the credit card company, turned out to be a dead end. I was told by someone who had the guts to be honest with me, that I had reached my glass ceiling early. They said that, because of my disability, and how I looked, I would never get promoted beyond the low level administrative job I already had. The department I was in was pretty small, and to move up, I would have had to move to a different department.

So, I bailed from Visa—after about eight years—but that’s another story.

For reunion purposes, I mostly started at the end—the 27 and a half years at prestigious university, which I had retired from in 2022. Some of my old friends had attended PU.

My mother wouldn’t let me apply to PU, “because they couldn’t afford it.” In hindsight, I now know that no one who is admitted to PU is turned away for lack of funds. I also know that PU had virtually no disability-related accommodations back then. With a power wheelchair, I think I could have done it though.

This is one of those turning points in life where my life took a sharp turn.

Takeaways

• If you have a big reunion coming up, if there are a couple of friends going, you should go. Could be the last chance to see some people.

• If you do go, get them to moderate the music so people can hear each other without shouting.

• Remind the planning committee to think about disability-related access. Even if you don’t need it yourself. As the disabled person, it is so nice and so gratifying to have the currently non-disabled people think of access without being reminded.

• Keep posting a running list of attendees to your reunion. It will generate more attendees.

Go Falcons! (I never attended an athletic event at my high school. Or at any of my colleges.)

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Dedication, and opening remarks

This is dedicated to a Reddit post in /disabled by a poster who needs to make her “property” more accessible in anticipation of an elderly relative who will be moving in. I am going to use this series to try and point her in the direction of specific things to think about.

Please remember that it is very possible that the level of disability that an individual experiences now will change over time. Don’t keep telling yourself; “I don’t need that now,” or “They don’t need that now; they may get better.” Or, worst of all, “if I make this too easy for them, they won’t have incentive to get better.”

While I need to stick tangible information here, I have to start by calling out ableism and how it can worm its way into these decisions. If there are choices that will make your space more accessible for any one with mobility issues and/or uses a wheelchair, why would you choose the less accessible option, unless there’s a financial limitation to the project.

I assure you that the idea that struggling (as the by-product of a disability) builds character is a myth perpetuated by ableist, puritanical people, who believe that there is virtue in pain and struggle. (My mother was such a person.)

Priorities

When someone asks me what should the priorities be if all the renovations can’t done at once, for whatever reason, I always say: 1) getting in out of the space safely and independently (if possible—some people may not be able do specific “activities of daily living” without help now, or in the future; 2) make at least one bathroom accessible to the extent that it is possible.

After those two needs are met, the other renovations depend a great deal on who will be moving into a space, and what they want to be able to do, sooner rather than later. If the person is able, discussing these priorities with them makes a great deal of sense.

Perhaps, you are doing renovations prospectively—maybe you are trying to anticipate a future time when there will likely be people living in the space who will become progressively more disabled, as the result of aging, if nothing else. (I am probably not the first person to point out that the majority of people do not go from robust good health and function to death. My experience is that a lot people don’t want to acknowledge this fact until they’re absolutely forced to.)

If you accept my proposition that struggle as a daily activity is not going to be good therapy for anyone (possibly in contradiction to doctors or PTs advice), default to how can we make this this space as accessible for the greatest number of people as possible?

Go in the Door—Which Door?

The front door to your space may not be readily accessible, while you have a perfectly accessible back door—or an easily made-accessible back door. There might even be an accessible door in the garage into the house.

From a political standpoint, it is not cool to relegate disabled people to the back door if everyone else is coming in the front. But, in real life, we have to make decisions that include our financial resources.

Maybe you could swap the front and back doors. At my house, we and our friends and family all use the back door; only Amazon and Grubhub comes to the front door.

I am going to describe my real world back door set up. There are six steps up to the back door. A few years ago, I bought a stair lift for the back steps; it cost around $6,000, which was out of my pocket. Health insurance doesn’t pay for it, and my income at the time was too high to qualify for my city’s assistance program. My husband and my best friend installed it for me.

The relief I felt at not having to go up the stairs, being afraid one of my knees might fail, resulting in a fall, is still a gift every time I use that lift.

I park my power chair at bottom of the stairs, transfer to the stair lift and ride up the stairs to my back door. Just inside the back door is my laundry room, where I get into my manual house wheelchair.

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The other options would have cost a lot more, and would have impinged on my car port. Or significant remodeling to front of the house. Again, more money.

Because of the ADA code, to put in a wheelchair ramp would require a 1:12 ratio (it’s math—don’t judge me.) That means 12 inches (aka one foot) of ramp for each inch of elevation. The estimate I got over ten years ago was 8k-9k, and the ramp would have had to wrap around the house.

I am happy with the choices I made. But, if the stair lift hadn’t worked out, I would have come up with a Plan B.

And now for something completely different.

Hinges

“Official ADA code” for wheelchair accessible doorways is 32 inches wide . If you go into a brand new home, or a commercial space, or a hotel room that is designated as a wheelchair accessible room, the doorway should be at least 32 inches wide. In private homes and apartments, or in older spaces of all kinds (that have not been retrofitted) one can often find narrower doorways.

Two approaches to this problem (that can be used simultaneously) are 1) have a narrower wheelchair to use in the house, if your regular chair is too wide, and 2) install swing clear hinges on problematic doors. These offset hinges buy you a couple of additional inches of doorway without having to do major renovations on doorways or removing a door entirely. Anyone who is moderately handy can install these hinges in a few minutes.

Pictured above is a swing clear hinge (also called an offset hinge.) You can buy them at Home Depot or Amazon (amongst many other places)—whichever you’re not boycotting.

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Lever Hardware to Replace Door Knobs

Pictured above are an example of lever hardware, only one of a bizillion different styles out there.

There are many reasons why turning a “regular” doorknob might be difficult for a disabled person to use—from a person with arthritis to a stroke survivor. My sister installed lever hardware on the door I use most often to come and go when I moved into this house, and she noticed me having trouble turning the doorknob. (My disability effects my grip strength—it hurts the skin on my palms to grip anything very firmly.)

Threshold Ramps

Pictured above is an example of one type of threshold ramp, made of rubber. One end of the ramp is flush with the doorway, and gradually slopes away, to enable a wheelchair or mobility scooter or a STROLLER to get in and out without getting stuck or experiencing a big bump when getting in or out.

I am not going to post examples of all the different types of threshold ramps—you’re going to have to trust me that are a lot of different types, made of different materials. I imagine that the different materials are more appropriate to some climates than others. (I like the look of the one in the picture because it doesn’t look like it wouldn’t slide around under the force of my chair’s drive wheels.

Okay, in theory, we got you in the house! Next installment will be about the bathroom! Ye ha!

(I am composing this on an IPad, and I can’t get various photo-related functions to work. This picture was in the digital color-by-number app I have been using. I was surprised to just find it at random—I was surprised, too, that they used the term “disability rights advocate.” (Description: The picture shows a young woman sitting at a table reading a Braille book. She is wearing a yellow short sleeved dress. There is a vase with roses in it, and a closed book entitled Three Days to See.)

The special ed school that I attended from age six to thirteen didn’t have a library. They had a couple of tall shelving units in their conference room. Almost all of the shelves had official-looking binders on them, adult books, and other publications of no interest to me. On one shelf, one that was at little kid height, there were some books for students.

I remember three of the books: The Wonderful Flight to the Mushroom Planet, by Eleanor Cameron, Karen: A True Story Told by Her Mother, by Marie Killilea, and a biography of Helen Keller written for children. There were about 15-20 other books on that shelf, but I don’t remember what they were.

It’s possible that the Cameron book was my first introduction to science fiction—I loved it. The Killilea book was about a girl who was born with CP (cerebral palsy). I remember reading that one and wishing there were more like it.

I am pretty sure that I read these three books more than once, but I definitely read the book about Helen Keller several times. I watched the movie The Miracle Worker, with Patty Duke and Anne Bancroft every time it came on TV.

A Couple of Days Ago

I reupped my membership in our local PBS station. As a perk, you get PBS Passport, which gives you streaming access to a lot of PBS’s past and future content. Then I cancelled my streaming subscription to PBS Masterpiece and PBS Documentary.

One of the things that frustrated me about PBS Documentary was that I couldn’t access past years of the show called American Masters. They run better than average biographies of Americans from all walks of life.

There have been 39 seasons of American Masters, and in season 35, episodes 11 and 12 are a good biography of Helen Keller. The episodes are different versions of the same documentary; episode 11 has both audio description (for the blind) and captions for the deaf. Episode 12 just has captions.

Incidentally, I keep the captions on for me all the time, even though I don’t have any hearing loss. Some shows have really poor sound quality (I’m looking at you, Britain.) If there’s background noise and/or actors with heavy accents, I don’t have to crank the sound all the way up to find out what they are saying.

Helen Keller and Annie Sullivan were both interesting women. Did you know that Helen did lecture tours all over the US. Among other things, she needed the money. Helen wrote 12 books in her lifetime, but not all of them sold very well.

Helen Keller was an advocate for women’s suffrage, and for civil rights for all people. I thought she was worth remembering on the last day of Disability Pride Month. This post is not intended to be an exhaustive retelling of Helen Keller’s biography, but rather a reminder”hello” to her memory.

I want to reach the widest possible audience, so I don’t want to put anything behind a paywall. But, if you appreciate what I write—if you find it amusing, thought-provoking, or helpful, please consider a paid subscription to Reality Check - Crip Edition. Of course, I love my free subscribers, too.

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(I am composing this on an IPad, and I can’t get various photo-related functions to work. So…The photo is a color headshot of actress Rose Ayling-Ellis. She has blond hair, green eyes, and is wearing an emerald green blouse. Photo credit: Wikipedia.)

Introduction

Contrary to popular advice on Substack, I am veering out of my lane with this Section of my Substack. I have been frustrated lately in not having a place to express my impressions of popular media, whether focused on crips or no. I love a couple of Substacks in this space already, and . I cannot recommend them highly enough, especially if you’re a major screen denizen like me.

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This is Rose Ayling-Ellis

https://en.wikipedia.org/wiki/Rose_Ayling-Ellis#:~:text=Edit-,rose,-Lucinda%20Ayling%2DEllis%20MBE

Rose is star of new program on the BBC streaming platform, called Code of Silence. (Silence and the character is deaf. Get it? So clever 🙄) Actually, it is not a bad title in the context of the plot.

Today (because I am retired and I can do what I want), I watched the first couple of episodes of Code of Silence . They are going to rollout the rest of the episodes once a week.

The show is a police procedural, so we have crooks and we have cops as per usual. The plot is mostly plausible—particularly the portrayal of the social awkwardness of the hearing characters dealing with a deaf person, Alison, Rose’s character.

The way the cops keep forgetting that they need to face Alison if they want her to read their lips, reminds me of being in meetings with ambulatory co-workers who leave their chairs in my path of travel when I am trying to leave.

I don’t want to give you any spoilers—but I think it’s safe to say that Alison’s decision making is problematic, only partially because of her disability. IRL, deaf people who are relying on lip reading only get some of the information in any conversation. They make educated guesses based on context. If they don’t have any context going in, it can be really difficult to parse out. Plus people turn away from the lip reader or multiple people are talking at the same time.

If you’re like me, and always looking for new things to watch, you should definitely check this out, whether you’re interested in the deafness aspect of the show or not.

Kudos to the BBC

I watch British quite a bit, and I am noticing more and more casting of disabled actors in their shows. I would say that they are way ahead of the US in this regard.

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A Random Parent Clues Me In

For years and years, I dreaded talking on the phone at work. One day, I just got over it. I think it was when I finally had the inner confidence in myself and my knowledge of all of tangentially related things related to disabilities that I needed to do my job well.

Much of the job was done over email, with occasional memos. I was very good at writing for my prospective audience when writing those emails—good news or bad, changing someone’s mind about something, or explaining things either for a sophisticated person or baby steps for a newbie or a hater.

But on the phone, you had no control over the other person and their emotions. My usual rationality didn’t always work with a random caller.

So, about five years before I retired, a call was transferred to me—nobody else wanted to handle the call.

The mom of a potential student was trying to explain her daughter’s condition to me—a condition that affected her both academically and in housing assignments. Mom says, “Have you ever heard of misophonia?” I hadn’t. I asked her to spell it so I could look it up later. Then, I asked her how she would describe it.

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What is misophonia?

Are there sounds that instantly cause you to feel intense anger, anxiety or disgust? Are those emotions extremely strong, even overpowering, to the point where they’re hard to control? These are features of misophonia, a disorder where you have a decreased tolerance to specific sounds and things you can sense (see, touch, etc.) related to them.

This phenomenon can affect people very differently. Some people may only have one "trigger" sound that causes this reaction. Some people can have several trigger sounds.

People can also have reactions that are more or less severe. Some people can’t control the emotions they feel but can control their responses. Some people can't control either, causing them to react impulsively. In the most severe cases, people may not be able to do certain things or be in specific environments. (From The Cleveland Clinic Cleveland Clinic definition of Misophonia)

“Well,” she said. “Certain sounds trigger a strong emotional response from her. Extreme irritation, even rage.”

“What kind of sounds?” I asked.

“People eating loudly, people chewing gum…”

“I have that!” I said, interrupting her. (She kind of chuckled.) “I didn’t know it was an actual ‘thing’.”

Mom said, yes, it was definitely an actual thing.

The conversation continued about documenting the condition for our office, which would enable us to support accommodations for her. I thought of maybe sound-canceling headphones for exams, and possibly a single room, if the daughter thought the sounds a typical roommate might make would trigger her, or keep her awake.

I also said that if they couldn’t get great documentation, she should still come in to our office and meet with one of our Disability Advisors. We put a lot of emphasis on a student’s self-report of their condition and how it impacts their life as student.

It was an unusually beneficial phone call for both me and Prospective Mom. Who knows when I would have heard about it otherwise.

My Grandfather Could Slurp A Sandwich

Sitting with my grandfather for a meal was excruciating for me. He ate very noisily and it drove me mad. I had a similar reaction to eating with my mom, but it wasn’t quite as bad.

I was trying to remember when I first started having these reactions, and really can’t remember, but the Cleveland Clinic’s article says that onset is often in the early teen years, and that sounds about right.

And should be thinking this a thinly veiled family issue, the other thing that really gets me are people chewing gum audibly, especially during exams or at the movies. Other people eating popcorn is pretty stressful.

My personal reactions to irritating sounds is to get very annoyed and want to leave wherever I am where this occurring. Kind of like fingernails on a chalkboard.

In school, high school and beyond, anyone chewing gum within my hearing would just get all my attention until I could get control of my irritation. If I was back in school today, I would ask for those noise-canceling headphones.

How About You?

Do you have this? Did you know it is a medically recognized thing? Let me know in the comments.

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Not Irrelevant, But Not At The Top Of Today’s List

When I started my Substack, I thought I would be sharing information about the Civil Rights for people with disabilities, crip strategies, my opinions, etc. But, the political developments of the last few months have felt like they really should take precedence over my “niche.”

Civil rights as a concept, and “protected classes” of people seem to be a quaint ideas these days. While they haven’t sent out the Crip Squad yet, it doesn’t seem too far fetched to imagine that could be on the MAGA agenda.

I said to a friend the other day that The Fun Palace (the phrase my dad used to refer to my former place of work—a university) was going to have to decide whether or not they would continue providing disability related accommodations if 47 managed to repeal the laws that mandate accommodations at the higher education level.

The Goober Gang in the White House hates anything that “levels the playing field” for any disadvantaged group. We know that Donny Two Dolls* relishes fucking with schools like Harvard.

We (my friend and I, among many others) also know that there is a sturdy group of faculty that would be just as happy if educational accommodations were eliminated.

Landlords and employers might be found dancing in the streets if housing and employment laws mandating accommodations were eliminated.

I hope the current treatment of undocumented immigrants (and the citizens of the US who “accidentally” get swept up in the ICE raids) serves to illustrate that my anxieties about the immediate future for my people (people with disabilities—PWD) are not unfounded.

Nothing Like a War to Divert Citizens’ Attention

If you want people to stop bitching about the price of eggs, start bombing another country. That’ll distract ‘em! What ICE raids?

Speaking of Distractions

I have been on an all out campaign to distract myself from the news. I have several methods:

• Reading other Substacks and commenting on them.

• Using a digital color by number app; occasionally I post the pictures. I had long thought that I would take up paint by number when I retired, but I hadn’t factored in two very attention seeking kitties in that equation.

• Bingeing shows on the many streaming services we have.

• Knitting! I have been a knitter since I was a preteen, but tend to drop it for a decade or two before I pick it up again. I can combine knitting and bingeing shows—provided that I don’t need to read subtitles.

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These Are a Few of My Favorite Things

These Substacks are my go-tos. I also read news and political Substacks, but we are focusing on distraction today.

Receipts From the Bookshop by is my favorite Substack. Katie writes entertainingly about her shifts in the Bookshop she owns and runs with her mom, Business Mum. I have been reading Receipts for over a year now, and I look forward to it. There are also book recommendations, which I read eagerly, but my current mindset turns out to not be conducive to reading books.

Everyday Knitter by is, I think, what inspired me to start knitting again. Louise is much more serious about knitting than I am, but she really makes me feel like you can put down your knitting and pick it up again later—no big deal.

My one drawback for knitting, in addition to my general sloth, is my two cats. They like to chew on the yarn. They like to lie on the tote I keep my project in—it is a shawl/scarf, which I really like to wear when I’m out and about in my power wheelchair.

Streaming

Only Murders In The Inbox by is a really comprehensive and well-researched look at all different types of murder mysteries streaming now. Reda has really deep dived into sub genres of mysteries and updates her lists. I’m always curious about what she says is on the streaming horizon and what she is bingeing now.

Beth’s TV and Film Recommendations by is slightly less focused on mysteries, but I find her recommendations to be right on the money. When I come across a show or movie that she hasn’t mentioned (doesn’t happen very often), I will post a heads up on her chat channel, which is fun.

Too Much Tv by is a deep dive into the business side of television production (which I sometimes skim), plus what is starting or ending, day by day, and announcements of new shows coming down the pike. I don’t always read Rick’s detailed analysis of the biz, but it is interesting for anyone following the ins and outs of mergers and corporate shenanigans that impact the programming that is eventually on offer for us, the viewers.

Other Crip Substacks

Rolling With It by is a thoughtful collection of essays about life with a severe disability. Like me, Kelly uses a power wheelchair, and describes her struggles with physical and attitudinal barriers to access.

Joseph Kibler writes his Substack about his life as a man, husband, father and actor who was born with multiple disabilities. I like that he writes about all of his identities, and acknowledges the impact his disabilities without making them the story.

The Tonic by Amy, who writes about life with long Covid. Her Substack glows with authenticity. She writes about her own experiences, and also provides a compilation of articles and research on the latest developments in long Covid research and treatments. She also has charming cats and a husband who sounds like a prince of a fellow.

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Multi purpose Distractions

When I started thinking about this post, I was thinking of the distractions in relationship to chronic pain, which is often a collateral benefit of many disabilities, particularly age-related disabilities. Then, I realized that I am using them to tune out the clown show in Washington, too.

For the time being, I am going to embrace going afield from my “area of expertise.” I am happy to write about disabilities, but it just feels to me like everything related to the law in the United States is in unpredictable flux at the moment. Legal advice could become very geographically based, if the federal laws are unlikely to be enforced. By that I mean, getting recognition of civil rights might have a better chance in certain states and localities. Which really sucks. Which is a big reason to have federal laws to protect civil rights.

Because I want to reach the widest possible audience, I don’t want to put anything behind a paywall. But, if you appreciate what I write—if you find it amusing, thought-provoking, or helpful, consider a paid subscription to Reality Check. Of course, I love my free subscribers, too.

Or, if you just want to show a little appreciation, or clink virtual mugs, you could buy me a cup of coffee at Buy Me a Cup of Coffee.

Failure to Thrive

Thirty years ago, I attended a conference for people who had ichthyosis.

I was born with a genetic disability called epidermolytic ichthyosis. This skin disorder causes the body to make skin too fast, and the skin cells don’t break down properly, so I get flaking, callouses, and painful blisters from friction (from walking and repetitive motion.) My body doesn’t sweat properly, so I tend to overheat.

I was in my mid-thirties and it was the first time I had met other people with my disability. Ichthyosis comes in many different varieties, from a slight flaking of the skin to more extreme disorders like mine. If you are interested in this subject, this would be a good place to read more FIRST.

This conference was the first place where I saw a child with ichthyosis (not the type I have) who looked like they had “failure to thrive.” (FTT refers to a condition where a child or infant isn't gaining weight or growing as expected, often due to insufficient caloric intake or nutrient absorption, or underlying medical issues. [Google])

I am happy to say that “failure to thrive” was never my problem. As in, look at the BMI on that girl!

Above, a grainy picture of my dad holding me when I was a toddler.

Food was my friend. I was always willing to try things, and liked most vegetables. Starting pretty early, my parents started to worry about my weight, not because I was terribly overweight, but because my mom was overweight and because I couldn’t run around and burn calories.

My mom was a good cook, and we always had nutritionally balanced meals.

When I was nine or ten, my dad started sending me with a thermos of grapefruit juice to drink with my lunch at my special ed school. I hated grapefruit and its juice. After trying to talk him out of it, to no avail, I acquiesced. Every day I dumped the grapefruit juice down the sink in the classroom. Easy peasy.

A few years after that, my parents put me on Atkins's diet two or three times. I didn’t mind it so much until I started feeling sick and shaky. They didn’t think I was faking, so I was able to stop.

In my late teens, I tried something I’ll just call NutraPuke. You would buy your food from them, but it was so full of artificial sweeteners and flavors that I couldn’t eat it. My parents didn’t force me to continue on that either.

In parallel, my mother tried various diets and had little to no success. This was in the’60s and ‘70s (when I still lived at home) and being overweight was very much thought of as a failure of self-control. It was terribly hard on her—I remember one time her doctor told her to eat only 1,000 calories a day. I’m eating about 1,200 calories a day now (with the help of a weekly shot), and I can imagine my my mom was hungry all the time.

Just to be clear, I wasn’t a compulsive eater—I just burning fewer calories than I took onboard, and my disability prevented me from exercising. So, I slowly gained a little every year.

Time Travel to This Century

In the early 2000s, I cut way back on carbs and lost some weight, but I wasn’t able to sustain it. At some point, I did another diet where I cut way back on fat. But I was no exception to the rule that most people gain the weight back and then some.

Add to this that I have a bonus disability of osteoarthritis. I’ve had both hips replaced, but I am reluctant to do my knees (which are shot) because I don’t know how my skin would handle the rehab from knee replacement.

I started hearing about Ozempic about three years ago. I am not diabetic, so it didn’t come up as a possibility for me then. As it gained more and more attention, culturally, I remembered the whole Fen-Phen disaster and was waiting for a similar shoe to drop about Ozempic.

On the contrary, the articles I see are about the new health benefits they are tracking for the semaglutide drugs. So, I decided to pursue the shot.

The long game of will-they-or-won’t-they (pay for it) with my insurance company was fun, but I won. Except that I have to ask for reapproval every six months, because you know, my incurable disability might be cured by then.

I started on Zepbound 2.5 on June 30, 2024. I slowly, over months, I titrated up 15.0, all with the guidance of my doctor. I have minimal side effects. I am rarely hungry, although I am only eating about 1,200 calories a day. (I track what I eat for my own record—it isn’t required. I also track in case I need to show it to the insurance company at some point.)

As of today, I have lost 40.6 pounds. My weight is lower than it has been in decades. I don’t care if I have to stay on Zepbound “forever.” I don’t think regulating my weight with medication is an indication of a moral failing on my part. Nor do I think it is a luxury, given all of my situation.

(An irony of all this is that if my mother was still alive and age appropriate, she wouldn't even try this type of medication. And, she would tell me not to take it. Just like she told me not to take antidepressants or pain meds. Just like she told me not to get a colonoscopy.)

If there is a larger message here, I think it is that when you have an essentially untreatable disability, try to control the things that are controllable to improve your quality of life. Air conditioning, a power wheelchair, a wheelchair van, and medication for treatable conditions, like depression and obesity.

I recognize that the money to pay for these things, and/or adequate insurance, are issues for many of us with disabilities. In this political climate, I don’t expect the financial situation to improve any time soon.

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Because I want to reach the widest possible audience, I don’t want to put anything behind a paywall. But, if you appreciate what I write—if you find it amusing, thought-provoking, or helpful, consider a paid subscription to Reality Check. If you want to subscribe but can't afford it, just send me a DM and I will comp you, no questions asked. Of course, I love my free subscribers, too.

Or, if you just want to show a little appreciation, or clink virtual mugs, you could buy me a cup of coffee at Buy Me a Cup of Coffee.

May You Live in Interesting Times

Every day seems to bring a fresh delivery of WTF. You know the hits already, or you’re ignoring the news on purpose—if so, good for you.

Who knows, on given day, whether any of the previous strategies to obtain or maintain medical/disability related accommodations will still work. Do the agencies or vendors a) still exist; b) still function; c) still have the staff you’re accustomed to working with?

How Do You Prioritize What To Worry About?

My late mother just worried about everything. Except in her mind, the evil Democrats were the ones who would crash the economy, devalue the dollar, and bring widespread unrest and insecurity.

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I thank the gods every day that she is not around to force me to discuss this with her. But, I am sorry that she isn’t around to appreciate that my financial and medical insecurities can be traced directly to 47 and his clown car of incompetents. She voted for him the first time, and would have voted for him again.

Semi-serious Question: Have any of These People Ever Managed Any Processes?

I have only managed about 20 people, at the most, all at one time. I had different teams doing very different tasks. I understood how involved the tasks were, and how much time they took. I tried to staff and train appropriately, within the constraints forced upon me by my robot overlords.

Periodically, far up the food chain, financial panic would set-in, and we would be asked to cut a percentage of our already lean budget. The only thing that saved us from catastrophe was that our services were legally mandated—meaning we couldn’t stop providing them. In addition, the law looks at the financial resources of an entire entity if it claims that it can’t afford to provide a particular service.

When I say “the law”, I mean federal laws like Section 504 of the Rehabilitation Act and The Amended Americans With Disabilities Act. I am sure 47 will be coming for these laws as well.

Watch These Documentaries

On Netflix, watch Crip Camp, which won Oscars, and which shows the organic development of the Independent Living Movement.

Just released on PBS, watch Change, Not Charity: The Americans With Disabilities Act. Both films were directed by Jim Lebretcht, who happens to be disabled. I just watched Change… this morning, and struck by two things. One was that on screen, there was my late friend, Gary Peterson, in footage from the early days of the Center for Independent Living in Berkeley, California.

The second thing that struck me was that when I worked at DREDF (Disability Rights, Education and Defense Fund) in the summer of 1992, how massively important their work was.

We may be losing fifty years of progress for the civil rights of people with disabilities in a tiny fraction of that time.

Back in the dark ages of the early 1990’s, I was part of a group of people with disabilities that formed a Democratic Club called The FDR Democratic Club for People with Disabilities and Seniors. If you do this by the book, you can endorse candidates and send out those annoying post cards to voters around election time. You can also interview candidates (who want your endorsement), and see where they stand on the issues your group cares about.

As one of the founders of this group, I met a bunch of local politicians, from Nancy Pelosi to Willie Brown. (My pals also got to meet Bill Clinton, but I opted out of that event for reasons that elude me today—nothing to do with Clinton personally.)

One of the first politicians I got to see in person was Frank Jordan, who was running for Mayor. I think that occasion was something of an impetus for us starting our club.

This was during a retrofit of Candlestick Park, then the stadium for the SF Giants (and the 49ers, I think.) Jordan had been quoted in newspaper as blaming the accessibility retrofits required by law (the law gets triggered if you are doing other remodeling over $50k) for the inevitable cost overruns that were irritating locals.

Disability activists invited Jordan to meet with the disability community at a meeting scheduled to be held at the Lighthouse for the Blind, which was a central location and known for disability activism.

Jordan was unprepared for the onslaught of questions about what he had been quoted as saying—it was him doing the Out-of-Context-I-Don’t-Recall-Shuffle in front of angry crips of all ages, shapes, and disabilities. I believe that was the year Brown defeated Jordan in the Mayoral election.

The Orange Menace-Let’s Blame Plane Crashes on the Disabled

As part of 47’s I-am-a-hammer-so-everything-else-is-a-DEI-nail mindset, he immediately associated the plane crash with DEI hiring policies at the FAA. He even read a statement from somewhere (not in ANYBODY’S HR manual as he read it!), which said the FAA was recruiting people with all types of disabilities.

Of course, it must be the fault of someone who was completely unqualified and unable to the job! 47 said he knew this because, he told a reporter, “…I have common sense.”

None of this surprised me. I was disappointed that almost no one pointed out that DEI or no, the FAA or elsewhere—just about everything he said in reference to employment for people with disabilities was wrong, false, and ignorant.

For example, an underlying principle of disability rights law in regard to employment emphasizes that a job candidate who has a disability must be “otherwise qualified” to the job. They “must be able to perform, with or without reasonable accommodation” the essential functions of the job.

47 would not pass this threshold test, IMHO.

DEI and People with Disabilities

In my limited (to one employer) experience, the DEI programs almost forgot entirely about the need to include people with disabilities in the creation of DEI policies, practices, and implementation. They hire or appoint people who know little to nothing about the issues of inclusion and belonging confronted by people with disabilities every day.

At my former employer, DEI was also on its way out as a bad job before 47 was even elected.

I know that the real story in 47’s case, was supposed to be about the plane crash, not about employees with disabilities, but please media folks—this tangential shit needs to be fact checked whenever possible. People hear it and don’t know how wrong it is, on so many levels.

I hope you enjoyed this post—although enjoy may not be the right emotional tone. I would love it if you would subscribe—free subscriptions get you access to everything for the foreseeable future. A paid subscription would be an act of support and love.

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The Irony Machine is Working Overtime

Did you know that when they are trying to start an IV line on a patient, they are looking for a flashback?

An IV line flashback is when blood appears in the chamber of an IV needle or catheter after the needle is inserted into a vein. It's a sign that the needle is in the vein and the catheter can be inserted.

I hadn’t heard the use of that term before in this context—or I blocked it out because my brain can only process so much irony at a time.

In Hard Stick, I wrote about how, because of my disability, (Origin Story) epidermolytic ichthyosis, it is very hard to take blood from me, much less start an IV. I wrote about how that plays out here A Tale of Two Surgeries.

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Next Up—A Colonoscopy!

So, with the above background, I tried to get everything in place for my colonoscopy, so that it would play out with as little drama or pain as possible.

1. I exchanged multiple messages with multiple people until I got prescription for Sutab, which is the pill form of the “prep” you have to do before the procedure. You do this prep at home day before and morning of the procedure, to “clean out” your colon so that little camera they stick where the sun don’t shine can see those evil lurking polyps. (The alternative to the pills is a liquid you drink to the same effect, but is the worst thing to drink I have ever tasted.)

2. Multiple messages to ensure that the IV would be set up by an anesthesiologist, who would use a portable ultrasound machine to find a vein.

3. This is in addition to the copious digital records of the IV issue that my medical provider already has.

Day Of

I arrive at the SurgeCenter and check in. I feel really lousy, but “normal” lousy I think, not extra “crip” lousy. I haven’t had any solid food for about 30 hours, no liquids for 3. I am super dehydrated. (I tend to be dehydrated anyway, because of the skin issue, and when I’m not playing colonoscopy, I try to drink a lot of fluids. I don’t really succeed in getting enough, but I am better at it than I used to be.)

When you are dehydrated, it makes harder to find a vein.

They take me back to the prep area and I meet the anesthesiologist, who is woman (I haven’t seen a woman in this capacity for many years.) She is visibly nervous and says things like “I can’t make you any promises,” “I will try my best,” and “let’s start the IV in the OR.” Initially, her lack of bravado was refreshing, but lack of confidence can be contagious and I started to feel uneasy.

The prep nurse sticks leads on you so that they can measure your vitals during the procedure. I told her to please not press them down too hard because I needed to take off after (not them), and they can rip off my top layer of skin.

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The nurses that were getting me ready also ran around and made sure that the ultrasound machine was in the room I was scheduled for. The nurses that pushed my bed down the hall and I joked about how I could really go for a milkshake right about now.

When we got to the room, one of the nurses said, “This is your suite.” I said, “If you could fill the ice bucket and close the curtains, and point me to the slot machines.” I got a little chuckle from one of the nurses, and kind of a test pattern from the other.

My anesthesiologist was in that zone where she can’t seem to hear what other people are saying. I asked for lidocaine after the first unsuccessful digging for a vein expedition, and she didn’t even respond. The nurses seemed nervous and did everything she asked them to, but I couldn’t see whether it was helpful or not.

My skin was dry. I hadn’t moisturized my arms because that would increase the likelihood of my skin getting sheared off by their handling of me. They put the tourniquet on so quickly and tightly that I am certain I would lost a lot of skin in that process if my skin had been more soft.

A second anesthesiologist came in (one of the nurses had seen him in the hall and mentioned it my doc.) He was older, ‘60s? He was a pediatric anesthesiologist, and they can be good with hard sticks. I wished that he had given a turn at sticking me, but that didn’t happen. (There is this undercurrent of professional etiquette and weirdness this whole time, between all the medical players. I would have called it out if I had thought it would have served me, but I didn’t think it would.)

Grandpop anesthesiologist started eyeing my feet, lifting up the blanket. Unbidden, I told him what my skin diagnosis is. Then I said, “We are not going to try my feet and ankles. I have agreed to that at least twice in the past, to no good purpose, and we’re not doing that today.” It hurts to take any clothes on and off, and my feet are no exception. There is also more scale and callouses on my feet than anywhere else on my body. He was very disappointed, but dropped it.

Meanwhile, Doctor Insecurity, kept almost getting it, but was not getting any flashback—which is when I learned the term. Eventually, she thought it was in, and we were all staring at the drip chamber, which was starting and stopping. I realized something and I said, “Does it make difference that you haven’t taken off the tourniquet?” I tried to say it in as neutral a tone as possible. After a beat where they all looked at each other, they took off the tourniquet and the IV ran better but not great.

Grandpop brought over a piece of strong looking adhesive to secure the needle, and I said, “No, that will rip my skin later. What about Coban?” (Coban is this cool stuff that wraps like an ace bandage, but is stretchy and sticks to itself when you want it to.) He said, “You don’t want her to have to do it over, do you?” It was all such a slow motion clusterfuck by then that I didn't argue with him.

Ultimately

I was sort of sedated, but I had told them to just go ahead and then felt the discomfort of the camera being threaded into my colon. (Unlike the cataract procedure, there’s no local, so you feel everything.) I even got some nitrous oxide through a mask because how much IV meds I was getting was uncertain.

You don’t feel everything, because I watched the surgeon excise a little polyp, and I couldn’t feel that.

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At Home, After

The adhesive patch Doc Grandpop used to secure the needle did take a postage stamp-sized layer of skin in the crook of my elbow. Another, twice as large area was ripped off when a lead had fallen off in the operating suite and they stuck a new one on real good. Those places on my skin just burned for a few hours. The one on my torso got stuck to my T-shirt, so I had to unstick that, again. Sigh.

Flashbacks indeed. I’m not worried about the 3 polyps I had, but I will get the word on them next week. Regardless, it means I should have another colonoscopy in three years.

I know that no matter how meticulously I try to advocate for myself, shit is going to happen, and I will be the one eating the shit sandwich. I knew this before, but I have to believe, as was the case with my ophthalmologist, that occasionally listening and learning happens, and I get to avoid most of the sandwich.

My shit sandwiches always come with a side of flashbacks.

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I hope you enjoyed this post—although enjoy may not be the right emotional tone. I would love it if you would subscribe—free subscriptions get you access to everything for the foreseeable future. A paid subscription would be an act of support and love.

Or, you could buy me a cup of coffee Buy me a coffee !

Because I want to reach the widest possible audience, I don’t want to put anything behind a paywall. But, if you appreciate what I write—if you find it amusing, thought-provoking, or helpful, I am asking you to consider a paid subscription to Reality Check. If you want to subscribe but can't afford it, just send me a DM and I will comp you, no questions asked. Of course, I love my free subscribers, too.

Or, if you just want to show a little appreciation for this post you could buy me a cup of coffee at Buy Me a Cup of Coffee .

Don’t Pay The Ransom!

Someone I used to know would say the above whenever he was horribly late for something—usually accompanied by a weird Kramer-like entrance (IYKYK.) The first time he said it, I thought it was funny, after that, not so much.

I haven’t posted in over two months and I feel bad about it. I just haven’t known I wanted to say.

So, that happened.

When I started writing this stack, I intended to share information and opinion about topics related to having a disability, from practical advice to explanations of various laws and policies.

After the election, and even now, I feel that a tremendous number of areas, including many that pertain to disability and health issues are up in the air, and definitely not in a good way.

Honestly, I find the outcome of the election so appalling that it fills me with anxiety and dread if I start to enumerate all of specific things I am worried (or scared shitless) about. How 4 years (or more?) of a MAGA government could impact people with disabilities is only one of the many things I am concerned about.

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Wage a Charm Offensive

One thing I noticed a long time ago is that people like my parents, who were bigoted about many groups, particularly different racial groups, were not bigoted in their behavior toward individuals in those groups.

Similarly, while I do believe that many people would just like people with disabilities (PWD) to simply not exist, or at least, not participate in the public sphere, I have found that many of these people can be “won over” on an individual basis.

For example, the conductors on our local commuter rail system, while unfailingly polite and professional, oozed that air of “oh shit” every time they saw me sitting on the platform. Because they have to physically go through a process to get me and my wheelchair on the train. (Very recently they purchased new train cars, but it is still not possible for wheelchair users to board the train independently because of design of both the trains and the stations.)

As rode the trains daily (for about eight years), I would see the same conductors all the time. Due to my natural charm and charisma, I won them over. In short, I became a person, not just an additional burden for them to have to deal with. They began to see the process not just from their perspective, but from mine as well. I was Teri, going to work, not just “an ADA”, which is how they would refer to us on their internal comms.

This approach has worked for me 95% of the time at most places I frequent often, all of my adult life. It can be exhausting if you’re forced to charm people you don’t like, or who are condescending, but it definitely works better getting what you need on an individual basis.

Don’t Count on Systemic Change

My perception is that we can’t count on any of the systemic changes that have happened in the last fifty years in regard to people with disabilities to remain intact under MAGA leadership. That is why I talk about a “charm” offensive as individual tactic. Who knows which laws will be overturned, or will simply not be enforced.

Setting up infrastructure to make public schools, venues (stores, restaurants, hotels, etc.) can be expensive, especially if you’re retrofitting old or non-compliant systems. How many school districts, hotel chains, etc., will voluntarily do what it takes to remain or become accessible if they don’t have to? Or worse, if it becomes a cause for criticism for a business to remain inclusive.

Doom Patrol

I don’t know how bad it will get, or how fast. I don’t know if there are any Republicans who will draw the line at dismantling systems that provide equal and equitable rights for PWD. I am not counting on them.

I am not saying that we should just march placidly onto the “special trucks”, but if just devolves into incompetent chaos, remember that fighting the good fight is one thing, and getting access to your favorite restaurant or bookstore is a more IRL and immediate proposition.

If you’re a PWD or are a parent or an ally, what (if anything) are you worried about, coming after January, for people in this boat? Let me know in the comments.

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