This is my Uncle Lindy. Great-Uncle Lindy to be exact. He’s my mom’s mom’s brother. I just found this photo again so I thought I’d post it. My brothers and me always called him Uncle Lindy even though he was technically our great-uncle. Like many people in his family, he was long-lived.
He lived with my great-grandma until she died. She was in her nineties. I was about twelve. He took care of her so she could live in her own home.
Whenever people talk about respecting traditional family values, I think of that. In our family it is normal to move in with a disabled relative if they’re in danger of institutionalization. Some people in our family prefer to put relatives in nursing homes, but most don’t. Whatever else we all disagree on, most of us seem to agree that people belong at home and that we have some responsibility in making sure they can to the best of our ability.
I think about that a lot because that’s a value of both the family I was born into and the family I have acquired along the way. And Uncle Lindy showed it by what he did, not what he said. I never talked to him about it, I just saw how he treated his mom, and that’s how I learned you don’t put relatives in nursing homes. That’s a real traditional family value I can get behind, although I also think family members should have a lot more support than they usually do when they make decisions like that.
I want to tell you a bit about (Great) Uncle Lindy because he’s very important to me even though there are ways in which I barely knew the man.
Uncle Lindy rarely talked to me. I don’t actually remember having any conversations with him. They might have happened, but I don’t remember any conversations at all. I remember spending time around him, but I don’t remember either of us talking, and I don’t remember that being weird in any way.
Uncle Lindy lived with my great-grandma in a tiny house. Tinier than my apartment. There was a long thin kitchen that was a tight squeeze even for a child. Then one tiny bedroom and an equallly tiny front room that doubled as a living room and my great-grandma’s bedroom. I think it must’ve been a fold-out couch, but I remember a bed taking up most of the room and her lying in it most of the time as she got older. She had a voice almost too small to hear.
There were stories about Uncle Lindy’s generosity. He never bragged about it. You heard these things from other people. But things like, someone came to his door who didn’t have shoes, and by the time he left, Uncle Lindy had given him his shoes. He was the same way with animals — dogs and cats came to his door wanting food or needing medical attention, and he gave them both. If they stuck around, they became his pets. He wasn’t an animal hoarder — they were clean and he took proper care of them. He was just someone who loved animals and gave them everything he could. He also hiked fish into mountain lakes in his backpack.
Anyway most visits to Uncle Lindy were kind of like this picture. I really like this picture. So I’m gonna post it again.
I would be sitting there interacting with some of the animals. And he would be there, or not be there, as the case may be. Sometimes he’d go off and take care of other things or talk to my parents. Sometimes he’d just quietly hang around me and the animals. I’m sure he must’ve talked to me about something at some point, but I don’t remember a single conversation. Conversations were certainly not the focus of our visits.
Also, it’s not quite as obvious in the photo as in real life, but behind me and Uncle Lindy, the windows are lined with glass shelves. And the shelves are lined with beautiful glass items that are great when the light shines through them. Little knickknacks basically. Vases and tiny sculptures and dishes.
Anyway, the light shines through all of those things, and it’s beautiful taken as a whole. He must have collected those.
Swedish decoration style involves a lot of ways to use light. There’s a lot of the year in Sweden where there’s not a lot of light at all. So Swedish house decoration often involves a lot of pale colors and other ways to make whatever light you’ve got count for a lot. I wouldn’t be surprised if Lindy’s beautiful knickknack collection, which captures the light coming in the window and makes the whole room sparkle with colors from the glass, has something to do with this. Swedes are often experts when it comes to making a little sunlight go a long way, and I wouldn’t be surprised if his mom took this expertise with her on the boat to America.
Also, we weren’t planning on dressing similar and having the same haircut that day, it just happened.
That was the last day I ever saw Uncle Lindy. I was in Oregon visiting my grandparents for the first time as an adult. I discovered that I liked Uncle Lindy a lot. So it wasn’t just bad discoveries on that trip, which is good because I’d also discovered the same day exactly how much I disliked my grandfather. But I discovered I liked Uncle Lindy just as much as I disliked my grandpa, so it evened out. (Both of them had to do with cats, too. My grandpa was proud of having hurt cats for fun. Lindy helped cats and never made a big deal about what he did. You can see one of the cats he helped in the photo, complete with Cone of Shame from recent eye surgery.)
Anyway, that’s my Uncle Lindy, and I miss him. He died shortly after one of the few relatives who does believe in nursing homes, had him put in one, away from his pets. After all Lindy did to keep his own mother out of one for decades (she ended up in one towards the very end, but he did his best), this seemed horribly unfair.
But what I remember the most about him is the way he cared about people, whether two-legged (human), four-legged (cats and dogs), or no-legged (fish). And he never talked about that, to my knowledge. He just did it. But what he did showed enough of his character, you didn’t have to talk to him to see it.
My DPOA/2nd mom just discovered the following situation.
So, I was in the hospital for awhile. I had low sodium (partially related to leakage from a couple of feeding tube sites) and two stress fractures in my spine. I was there a long time. They messed with a bunch of my meds. I let them. I figured the hospital was as safe a place as any to do it. I don’t like being on all these meds. And I know that some of the meds that treat symptoms of one of my conditions actually make the condition itself worse, so it’s a tradeoff and I understand why they’re careful.
But I was sure it was just an innocent mistake when I found out that Reglan had been dropped at some point from my list of medications.
Reglan is the only medication FDA-approved specifically for treating the underlying problem in gastroparesis. Gastroparesis means your stomach is partly paralyzed (probably due to neuropathy of the vagus nerve) and empties too slowly. Mine empties so dangerously slowly that I can’t get enough food without bypassing my stomach, and aspirate stomach contents even in an “empty” stomach because the fluid build sup and backs up into my lungs. That means two feeding tubes, one to drain my stomach, one to go straight into my intestines and avoid my stomach. I’ve got a third hole where a feeding tube used to be that got wrapped around my intestine and had to get pulled. It’s the old unclosed hole and the new feeding tube hole that leak too much. Not leak normally for a feeding tube, but leak so much it can get dangerous to me. This is partly due to long-term medical mismanagement even according to medical professionals who’ve discussed it with me.
Anyway, whenever I come in with excessive leakage, they decide they have to prove that they’ve done something about the leakage, and that they know what they’ve done.
Even if nothing changes.
Or even if they’re completely making things up.
So when I was in the hospital, I was getting several different lines of bullshit about why my hole wasn’t closing and why leakage was happening. I eventually got out of them that they flat-out didn’t know.
They seemed very all or nothing. I encouraged them to think about little things — that even having the support to eat by feeding pump (slow) rather than bolus feeding (stuffing things in with a syringe, bad idea with a J-tube because intestines don’t expand to hold food the way your stomach does), changes the amount of leakage I get. I said anything that either changes the leakage or changes the reaction of my skin to the leakage is an advantage even if it’s tiny.
So the things that really seemed to help, were differences in bolus-feeding habits, getting my meds on time and reliably (which itself requires it to leak little enough that meds don’t leak out again), and differences in skin protection care around the stoma sites.
But… we find out all these months after I get out of the hospital, that:
I’m not on Reglan/metaclopramide, and nobody told me or my DPOA or anyone else why I was taken off of it.
They are now claiming that pulling me off Reglan “stopped the leakage”.
The instructions in my chart read that if I am to “leak again”, I need to stop the Reglan.
In the time since the Reglan, I have struggled to eat anything at all, lost a lot of weight again (I know I don’t look it, but I’m on steroids, so…) struggled to keep up my electrolytes, and a lot of it because my guts are moving too slowly.
Reglan is the only thing in America I can take to make my guts move faster. Erythromycin doesn’t work (and wouldn’t likely work for my kind of gastroparesis, given that it works best for certain causes I definitely don’t have). Domperidone is not FDA-approved here even though I would love to be on it because I can only take a half-dose of Reglan due to motor side effects at full dose. (Domperidone doesn’t cross the blood-brain barrier but has cardiac effects. But in a disease with so few treatments it seems horrible not to allow it. The only other option is a surgery that’s itself dangerous and that I’m ineligible for.)
Reglan doesn’t just treat nausea or reduce acid like the other meds I take for gastroparesis-related problems. It actually makes my guts move faster. Given that my esophagus, stomach, and large intestine have all showed slowed rate at various times throughout my life, that’s kind of a big deal. The only part that’s never been slow is my small intestine, which I consider myself very lucky for. If you want one part of your guts working right, that’s the part you want working, because it’s where the food is absorbed the most.
So it’s a huge deal to take me off the one thing that might be speeding up all the slow parts of my guts.
And it’s an even huger deal to take me off it on the basis of something they have absolutely no proof of.
If they could prove that changes in Reglan, and Reglan in particular, changed the leakage, I would listen to them.
If they could prove Reglan was doing more harm than good, I’d listen to them.
But like usual, they didn’t even tell me, didn’t even ask me.It was a struggle in the hospital to even tell them how bad the leakage was. Because they kept insisting they could tell by the number of dressing changes the nurses did. When we heard that, the nurses and I both laughed, many times — we didn’t know how else to respond. We knew full well that the number of dressing changes was more connected to how many nurses were available than how many times the dressing needed to be changed. My tube leaked, and leaks, continuously. It pretty much never stops. You could change the dressings all day and not change them enough, many days. So instead we found ways to protect the skin — the ostomy nurses were great at this — so that even if it leaked, it was less likely to burn and do damage. Because bile and digestive juices on your skin just eats your skin, and that causes as much pain, chemical burns, and blisters as you might imagine. This is my skin on a good day:
Adding Reglan has not increased my leakage.
But the moment my leakage increases again — it changes in how much it leaks, but it always leaks way too much compared to how a tube should leak — they’re likely to blame the Reglan no matter what happens.
Because it matters more that they “solved the problem”.
Just like last August they “solved the problem” by upsizing (increasing the size of my feeding tube). Even though:
The problem had started resolving a little before the upsizing
Upsizing is known as only a temporary solution to these problems at best
Upsizing did not stop the leaking
I have been complaining about the leaking, as have my home nurses, ever since the hospital stay while they upsized, and heard nothing back until this hospital stay pretty much.
The upsizing was my idea and connected mostly to the fact that the tube I needed was only available in the next size p and my last tube had broken. By my idea, I mean the doctors had to get all stern and go away and Talk Amongst Themselves about it to see if they thought I was right before they’d do it, even though I’m supposed to be able to request my own preferred and usual type of tube after that point in time.
They were so confused about what was going on at the time, that they tried to stick a tube of the completely wrong size in the completely wrong hole until I shouted to stop them.
It was my idea and a “bad idea” until they’d approved it.
At which point it was their idea all along and it “worked”.
So last year sometime, something similar happened. They had to prove they’d Done Something About The Problem even though they didn’t really want to do anything at all :(the whole hospital stay was itself because they were fighting over whether anyone had to treat me, and who that would be if so). So they came up with the idea that the normal ebbs and flows of my leakage were tied to “their” idea of upsizing my tube. (And my tube was only upsized because the old one had started falling to pieces., it wasn’t originally intended to have anything to do with leakage. MIC-KEY J-tubes just don’t come in that smaller size, and the smaller size was very clog-prone and yucky.)
Anyway… so they did this. They said “Upsizing fixed it” even though “it” was never “fixed” at all. They took credit for an idea that wasn’t theirs — and I wasn’t fussy at the time as long as I got the right tube in the end. (I still have the same type of tube, which lasted a year before part of it started falling apart. Which is really good for a feeding tube.)
Later on they told me that by upsizing then ignoring it this long they might’ve created an impossible problem for me. That it might be too late now because they’d pretended everything was okay for so long that there might be damage done they can’t undo in several respects. If that’s true, then why do this again….
But that’s what they’ve done.
They’ve claimed the leakage stopped. It never stopped. I’ve been having continuous leak problems for a long time.
And they’ve claimed they know what “stopped” it — one medication among at least half a dozen they were manipulating all at once.
And now if I continue to have the problem that never stopped, they’re gonna blame something that I was still leaking, and leaking badly, when I wasn’t taking it.
And the thing is…
I need many nausea meds.
I was taken off several and I know why and it makes sense– they actually slow down stomach emptying even if they make me feel better. If I can live without them I want to.
But Reglan isn’t like that, it actually speeds up stomach emptying.
Phenergan and Dronabinol are my main nausea meds. They’re the ones that sort of hold things steady with my long-term nausea and keep me out of the hospital.
Zofran is a third, one that I take when there’s severe but short-term nausea. I don’t like to take it because it gives me headaches. But it works when it works, and I do take it sometimes.
I’ve been having so much nausea from small volumes of food in my intestines that I have had trouble eating a full meal. Right now I’m eating meals that may not be as good nutritionally as what I’d eat, but are easier to digest. Same thing you’d do if you were feeling sick and you ate by mouth. I just forgot to do the same thing by tube feed. So my roommate started making me sick food. It’s working, i’m getting food, and I’m working hard at eating. And it is hard work to get even a normal amount of food down. I have trouble getting a full 1000 mL a day. I’ve been anemic and protein-deficient and had problems with my electrolytes. I’ve had another hospital stay, I think, although I can’t remember what happened.
And all this time I had no idea they’d pulled my Reglan, let alone on purpose.
Let alone that they’re not being honest about what’s going on there.
Because it’s dishonest, on some level, to claim to have solved a problem that’s still there. Especially when you did a zillion things at once and you’re just picking one of them out of thin air to promote as the One That Worked.
And my GP is out of town, that’s part of how things have gotten completely out of whack. He has a good sub working for him, but I really need to talk to him in some way that isn’t third-hand on the phone. He doesn’t even know (nor do any of you, to my knowledge, because I haven’t been writing about it) what the latest med disaster has been or why, but had to do a whole lot of work to fix it by phone.
And like… I know that my horrible sense of time contributed to the med disaster.
But so have a long string of errors, oversights, wishful thinking, lying, and assorted weirdness from medical professionals. Not to mention neglect from the people who are supposed to be helping me manage my meds. The weird kind of neglect where they at the same time try to claim “We’re so worried you’ll hurt yourself getting your meds wrong” but they get your meds wronger than you do and don’t even notice.
At any rate, my meds got screwed up recently because my sense of time is much, much, much more deeply weird than I understood it to be, and I’ve been ignoring the degree to which epilepsy has affected everything about my life. And I ended up on a weird free-running med schedule where I ended up taking too much of half my meds and too little of the other half, pretty much. Not on purpose but because I can’t track time and was relying on other factors to track my meds. And because I was being expected to do my own meds, when that had been told to me as “You’ll only need this for emergencies.”
But seriously guys?
Don’t claim you’ve solved problems you haven’t solved. I’m sure it makes you look great on paper. I’m sure it limits some kind of liability or helps with insurance in some way or some crap like that. But it does me no good when you do it at the expense of my health.
And it says something that I didn’t notice I wasn’t taking one of my most important meds, even when I couldn’t eat.
And just… can I please just have the support I need to live in the body I’ve got, and not all this other crap I don’t need or want, combined with total neglect of everything I do need?
Because the rest of these many variations on medical neglect aregetting old.
And mind you there’s lots of medical professionals who do care about getting it right, and nobody can get it right all the time even so. But there’s so many who don’t care, or who care more about other things than they care about this.
And they shouldn’t care more about proving “I solved this” than about whether their “solution” is just some random crap they did that actually hurt me more than it helped, and where the “lack of leakage” didn’t even happen.
(A lot of this was taking place when the hospital was trying to declare me a non-medical patient in order to discharge me early because they couldn’t find a rehab, among many other convoluted reasons. So I was dealing with things like oxygen sats of everything from the 80s all the way down to 75, where they had technicians come in and test multiple machines and multiple finger probes on me, all trying to show that the readings were wrong, but the readings were consistent the entire time. Because they didn’t want anything to be medically wrong, so even when they had solid proof something was up they’d ignore it when possible. So of course they could imagine “leakage stopping” as a thing, even as they were telling me out loud that the leakage would never stop and had not stopped.)
Yes, i’m writing about this for a reason: If it’s happening to me, it’s happening to others, and it’s bad and dangerous as a way to do medical care. I don’t know which people figured the leakage stopped — often it’s a game of telephone among people who never physically examine me or talk to me directly, but all discuss things with each other — but someone claimed it did and someone claimed it was the Reglan and I’ve been paying the consequences without knowing it.
I’m sick of me and my family getting the consequences for everyone else’s mistakes.
It keeps happening.
Nobody’s held accountable.
And the only punishment is on me and anyone trying to take care of me. And to be clear, there’ve been a lot of great people involved. Just not enough with enough power and knowledge, to get the right things done. (Quite often I notice the nurses pick up on something being way wrong but have to be subordinate to doctors. Which weirds me out because nursing and doctoring strike me as two separate types of medicine, rather than one type that’s “supposed to” call the shots and the other that’s “supposed to” listen. But what do I know, I’m just a patient.)
Nausea is getting old. Hunger combined with disinterest in food is getting old. And I have meds to manage these things with, but the threat of having the ones that work taken away for someone else’s wish fulfillment purposes is really getting old. Reglans’ close to all we’ve got in America and taking it away from someone with gastroparesis ought to require more proof than that. Including proof that the problem ever actually resolved itself. Which it didn’t. (Which we know because there’s a nurse in my home every single day to check my skin and leakage. There’s plenty of documentation that the leakage has gone nowhere.)
Towards the end of 2014 was also the end of my dad’s life. He died at home. In his last few weeks, he couldn’t speak anymore. I was too sick to travel all the way across the country and into my parents’ house in the middle of the mountains. So I was the only member of our immediate family who couldn’t come to see him in person. And I couldn’t speak either.
We’d been doing video chats on Skype a lot. He’d talk, and I’d type, but mostly we just hung out and loved each other. But now neither of us could talk and he couldn’t type either.
When he became unable to talk anymore, my mom set up their laptop on my dad’s hospital bed, and started Skype video chats for us. Instead of talking or typing, we just stared at each other, and loved each other. And that’s how we said goodbye.
I never knew there were any photos taken at the time, but during the hospital stay after I broke my back a second time, my mom sent me this photo of me and my dad Skyping. I’m really glad to have these memories. I’m really glad we had the chance to say goodbye. I feel amazingly lucky for that.
When he died, he sent me a chunk of his beard hairs. (When I was little, he always let me play with his beard and his loose skin.)
I have been wearing those in floating lockets ever since, and they’re really beautiful. Photos don’t do them justice. But I’m able to walk around with a piece of his beard worn as jewelry every day. My mom sent some more beard when I was in the hospital, because somehow in the lead-up to the hospital stay I lost my other locket, and my spare beard hairs are in a drawer somewhere inaccessible to me right now. So when she sent the other beard hairs, I was able to put them in a new locket. I’m equally grateful to have something physical and tangible to remember him by any time I want to. Beard hair is more durable than memory sometimes.
And I’m really glad to have a father who understood how much can be said without saying it, who knew how to communicate using objects, and who spent his last days doing his best to love as much as he possibly could.
Explaining my communication style is a waste of time.
Attempting to correct communication misunderstandings is a waste of time.
The only good use of my time is what my social worker says it is.
She gets to define what topics are worthy of conversation and what topics are not.
I don’t get to define anything.
She gets to define how much time we spend together planning my discharge.
She is talking about my options at discharge.
I am not allowed to return to my own home if I want services. Howard has declared it unsafe for staff. It was not unsafe for staff the entire time they were giving me services there up until now, including times when I have been in the hospital. It is suddenly unsafe for staff so they can force me to use a cleaning service they have decided I need to use and have been trying to get me to use for months now. (I did use that cleaning service to clean out an area that was genuinely unsafe. When evaluated, only that area was considered unsafe, not my entire apartment. Howard has seized on the idea of declaring my apartment unsafe for other reasons. Also the part of my apartment that was unsafe was only unsafe because of the state someone else left it in, it was never something I was considered to be responsible for.)
I had by the way been told it was an access issue (not being able to get around with my walker) until it suddenly and unexpectedly became a “safety” issue. I guess safety issues are a bigger deal. They didn’t care about my safety when they were fucking with and probably causing my stress fractures so I have no reason to assume they care now.
So I set up a situation where I would be living with someone else while I recover from my injuries and illness. We’d been expecting to have to do that anyway because I’m in terrible shape and the hospital wants me out anyway. I’m leaving Tuesday.
Anyway, I’ve lived in this person’s house before, with a bed larger than my bed is now. They now claim that my bed will make her house unsafe for staff. They also claim there is no seating in her house for staff. None of this is true.
At any rate, not only do my social workers get to control conversations, but they apparently get to control things about the placement of my bed. And Howard gets to decide whether my bed is safe. Howard helped me buy and transport this bed in the past and were only too happy to help. Now I am being told I will get the minimal help possible and then only if I toe the line in all these weird ways that have nothing to do with safety.
(The seating thing is an ongoing thing they bring up at the house I am staying at. They don’t like the house’s inhabitant. That’s what’s really happening. They have never given me crap about seating at my house which is far worse than the house I’ll be staying at. Also whenever offered seating they refuse it. Including at the house I’ll be staying at. There is more than adequate seating but they refuse to use it and then claim there’s no seating because they refuse to sit down.)
So there’s another agency I get services from. I am told they also have a problem with serving me at the house I’ll be staying at. They have always served me there before. I am told, again, the problem is the bed, and that if Howard doesn’t approve the bed, this other agency will not either. We have contacted the other agency, which has assured us that this is not the case whatsoever, they are fine serving me as far as they know, and if they weren’t okay with my bed, they’d just use the other bed in the house, which houses another of their clients who receives services from them with no problem whether my bed is there or not.
At any rate, it seems like people are playing games with me again.
And it seems like I am yet again being penalized for having developmental disabilities.
Because guess what?
When you sign on to work with people with developmental disabilities?
You’re signing on to work with people who take more time to process information, who talk around topics instead of being able to come up with the words for the main topic straight away (and in doing so take a lot more time to talk than usual), who have trouble with emergency speech if we have speech at all, who have trouble with language, who have trouble using the typical set of social skills, who have trouble with timing, etc.
And you know what the solution is not?
The solution is not to treat the person like their attempts to explain themselves or the barriers to access they face are wastes of time, like the only possible good thing they could be doing with their time is not wasting one second of yours. Where you, of course, get to define what’s a waste of time and what isn’t, what’s important and what isn’t, etc.
Because it’s disgusting to treat another human being this way.
I’m another human being. I’m not that different from you, no matter who you are. I have faults and I have good points. And I don’t deserve to be treated like this.
And yes, I know you think I treat you badly. I don’t. There’s a difference between being unable to do certain social skills the typical way and not giving a fuck and the difference matters. Especially when you’re paid money to at least act like you give a fuck whether you do or not.
Howard social workers have to serve clients who try to hit them.
I don’t try to hit my social workers, at Howard or elsewhere.
If they’re obligated to come and meet with and be respectful towards people who hit them, they’re obligated to do the same for me.
No matter how much my communication and language offend them.
By the way the more emergency speech I have, the worse my communication skills are and the more likely I’ll do things people find offensive. Same with the more people are in the room, the more stress they put me under, the more their “communication” is not really communication at all but more an attempt to tell me what to do and control my actions, etc.
There’s people in the world who can’t even imagine why I’m treated this way. They have trouble believing that there are people who see me as rude and difficult.
It’s mostly because they don’t come into interactions with me with the goal of getting me to do what they want of me. And they don’t expect me to be something I’m not.
And you know, after nearly 40 years of total anguish that I can’t be what highly controlling people want me to be, I’ve had enough. I can’t be what they want me to be. I’ve tried. I can’t. If they can’t deal with me as I am, they just have to deal with it.
No, that doesn’t mean I’m not accountable for my actions or that I’ll never change. It just means that I won’t change at the whim of people who only want me to change to make me easier to control.
I’ve had enough of that for a lifetime.
Being in the hospital sometimes makes you think about what actually matters in life.
And pleasing social workers is one of those things that you don’t want to spend the rest of your life trying to do.
If you can help at all especially if you’re in the Burlington area, please see my recent post (no, I don’t know where it is, but it should be easy to find) because I might need a lot more help than I thought I would if I end up being cut loose by lots of people whose job it is to actually help me. There’s a post with contact info for Laura. Contacting me won’t do much good. My abilities are still haphazard and I’m writing when I can where I can and not always reading.
Oh also they basically still won’t help me with anything, even if I jump through all their hoops, unless I carry out physical elements of the tasks involved. So I’d still need to be physically participating. Or else hiring a cleaning service, because everyone on disability can afford to do that! Also if I don’t hire a cleaning service or do my own cleaning or whatever, they can withdraw services at any time if they decide my apartment isn’t clean enough. So now I’ll get penalized in one more way for having the disabilities that Howard exists to help people deal with, and that Howard has been helping with for most of the pas 13 years. Because I can neither do these things, nor afford to hire someone to do them. (They know I can’t afford it yet they keep bringing it up.)
And that’s just one piece of the tangle. It’s exhausting just to think about. Please don’t write me “easy” ways this could all happen. If you have actual ideas write to Laura. I’m exhausted and it’s gonna be hard enough recovering from this hospital stay without additional crap to deal with and think about, whether that’s agency BS or other things. And sometimes even the most well-intentioned advice is way too much to deal with.
Anyway this is pretty naked cognitive ableism. That’s what it is when you tell someone that access doesn’t matter, understanding the way their communication works doesn’t matter, and every topic that matters to them is a waste of your time. I have developmental disabilities. This isn’t going away. There seems to be a whole lot of that sort of wishful thinking going on around here — “This isn’t convenient, so maybe it’ll disappear if we make Mel feel shitty enough about it being attached to hir.” Also a lot of old=boys-network-style corruption with social service agencies around here. Like the time (maybe 7 years ago?) I and some other people stood up for my right to get a life-saving treatment I was more than qualified for, at the hospital, and my Howard case manager after it was over chastised me for “jeopardizing Howard’s good relations with the hospital”. Yes, she actually said that, and that was one of the better social workers I’ve had. And that factors into how all these agencies work together, too.
Right now my baseline walking ability is pretty damn good for someone with spinal stress fractures. On an average day I can take my walker out in the hallway and do seven laps in a row. I get sore but I could usually push on further if I had to. I am not even necessarily out of breath after all that.
One day recently I did two laps with extreme difficulty and then my legs got wobbly and almost gave out. It felt similar to a congenital myasthenic syndrome sort of thing, muscular and not back related. I’d also been feeling weird all over my body, and getting disoriented and having unusual emotional reactions.
I did what I’ve been taught to do. I reported all this to the nearest medical professional. I don’t remember who she was, not that it matters because the point of this post isn’t to put her on the spot. But her reaction was very typical of medical professionals in general when dealing with me. Some of it was a general attitude people have towards patients, but watching how others are treated, I get more of it than other patients who don’t have developmental disabilities. So there’s extra biases at work for me.
Anyway, when confronted with this situation you’d expect a medical professional to ask if I was okay, or ask further questions to figure out how I was feeling, or try to find out why I suddenly couldn’t do something that was coming so easily most of the time these days.
Instead I got, loosely paraphrased, “That’s what happens when you stay in bed all day.” Lest anyone think I’m some kind of hospital couch potato, I’d been in bed that day because I felt sick, not because I’d been making a long habit of it.
Let me put this plainly: This is a dangerous level of rudeness. It turned out I had low potassium. This was one of the first signs. It is almost always true that if I have sudden extreme difficulty doing something I could do easily just one day before, something is going wrong with my body. It is wrong both factually and morally to, within a matter of seconds, jump to the conclusion that I just need to work harder or that I’ve done something to cause the problem.
It’s also mean and puts me in danger. It’s dangerous because it makes people less likely to look for whatever is really causing the problem, which is often something that could turn serious untreated. It’s also dangerous because it makes me less likely to ask for help or inform anyone next time. And it’s mean because it treats me different than you’d treat a friend or expect to be treated yourself if you suddenly had trouble doing something you can always do.
There’s very little compassion in the response I got, but it’s pretty standard towards DD people with health problems. It’s one reason that rather than slacking, we tend overall towards pushing ourselves until we drop. Many end up in the hospital. Many die. Often from conditions that are treatable if caught early. That’s one reason I take these dismissive responses so seriously. It might not seem like a lot but the overall consequences can be extreme.
So please, if I say I’m having trouble, treat me like I’m having trouble and try to find out why. Don’t treat me like I must’ve done something to cause it and need to be pushed to work harder. And as always, I’m saying this on behalf of whole classes of people who get treated this way, not just myself. It applies to all of us. But I’m asking for myself, too. I don’t deserve to be treated like this either.
I got into the hospital in part by doing what everyone else told me to do. I got stress fractures in my spine. They got worse. I got all of this by doing physical work other people thought was important to proving my motivation or demonstrating independence. They took advantage of my pride in my work and other things to make me easier to persuade. But the end result was I broke my back twice.
I made a promise to myself I wouldn’t do that again. I wouldn’t listen to other people’s ideas of what I should do if it conflicted with what my body could tolerate. It doesn’t matter who they are or what their motivations.
If you can’t tell by now that I have a ton of motivation, nothing I say or do will convince you.
I don’t have to explain. Because I can’t always explain. And because most of the time people are looking less for explanations and more for things to argue with. Again if you don’t believe me by now that I know my limits, nothing I do will convince you.
Also it’s pretty condescending for all these other people to decide for me what I ought to be doing. There’s plenty I want to learn. So far, I’ve had to fight to get taught any of it. But when others decide I need to learn something, I’d better. This shows no respect for my choices and my body.
I’ve been living in this body for a long time. I have:
Stress fractures of vertebrae
Healed hip stress fracture
Congenital myasthenic syndrome
Severe adrenal insufficiency
Many other things
It’s difficult to understand these things and more put together at the best of times. I may not be a doctor or nurse but I know when something is taxing too many abilities, when something hurts, when something seems wrong or dangerous. I’ve learned most of it the hard way. I have an extreme tendency towards overdoing things and to push me harder in that direction can put my health and life in danger. Yes, even if what you’re asking me to do feels minor. Little things add up, and what looks little to you may be huge to me for reasons you’ve never even considered.
If everything I’ve said and done doesn’t convince you I am motivated and know my body, nothing will. I have nothing more to prove. I’m not going to do something just because someone else has decided I ought to. It doesn’t matter who. It doesn’t matter if they have good motivations. Enough is enough. It’s disrespectful and dangerous to continue to tell me what I ought to do in order to fit your definition of independent or ready to go home or willing to learn.
I’m done. You either take me as I am, or you don’t. You either trust my ability as a fellow human being to make my own decisions, or you don’t. You either respect me and my decisions, or you don’t. If everything I’ve done by now doesn’t convince you, nothing I say or do will. So let me learn at my own pace the skills I have decided I need, listen to me rather than trying to find new ways to persuade me why I ought to do as you want, and trust that I have valid reasons for my decisions even if they aren’t the same decisions you would make. Don’t make me tell you this conversation is over, because I will if I have to.
Listening to everyone else over the warnings of my own body is what got me into the hospital. I broke two vertebrae and continued to do physical labor with an unhealed fracture. I went out and did errands with a bad case of pneumonia until I almost passed out. I let people treat me like they always knew better. I ain’t doin’ that again.
To make medical decisions, I need the time to have a two way conversation with the doctor.
I need time.
Nothing changes this.
Shortcuts and attempts to speed it up slow it down more.
I literally walk faster than I run.
My brain is the same way kind of.
I get there. But I need the time. If it seems fast it’s because I’ve done it a million times already, many of them slowly.
Many times people assume based on the end product.
So if I have a complex thought they think it’s a fast thought.
I get to complex thoughts slowly usually.
Or they look complex. But they’re actually simple. But they translate as complex when they combine with language. Or people think lots of words means complicated. It doesn’t. It can mean I had trouble finding the right ones.
At any rate if people think they see complicated thoughts they often think that means fast thoughts. Or they think if I type or move fast I think and understand fast. Or they think fast in one context means fast in another.
None of those things are true.
I do best with things outside of what most people think like.
To get usual types of information and respond and have it be meaningful I need time. Lots of time. I get there but it takes a lot of extra time whether anyone sees that time or not.
To make it look fast I have to take dangerous shortcuts that harm me or confuse me.
I get confused easily.
I am good at not showing it. I suspect anyway. Sometimes.
But I get confused a lot. And it takes me time.
All of this is disability related.
I have developmental disabilities. I have cognitive disabilities. I have physical disabilities. All of these things are part of it in their own ways.
I usually tell people if you think of me as having a brain injury I make more sense. It’s the easiest analogy most people are likely to be familiar with.
But really as labels go I can identify a lot cognitively with people with dementia, stroke, brain injury, intellectual disability, epilepsy, autism, learning disabilities, developmental disabilities, and lots of other things. Some of which are labels I’ve received or qualify for and some aren’t, but there’s cousinhood going on big time even when I don’t. Cognitive kinship.
It’s the way thinking works and the obstacles we face in the outside world that determine our similarities and differences, far more than what diagnosis someone decided to give us.
That’s one reason I don’t like communities based in a single diagnostic label. I’d rather seek out familiar people wherever they can be found. And there’s something degrading about being told that it’s the labels the medical profession decided to give us that determines whether we find that kinship. That’s one reason the developmental disability self-advocacy community insists on labels as less important than in some other disability communities. We’ve found a kinship based on common experiences and common values and desires among other things. And we prefer that to being divided up by other people’s ideas of categories. And we’ve had our categories used to erase our humanity. We have lots of reasons.
Most people with developmental disabilities have cognitive disabilities of some kind. And many of us, for many reasons, take time to figure things out, time to respond, time.
This is not just a personal request. It’s about accessibility. Accessibility isn’t just about what people want. In many places, including here in the USA, it’s the law.
Accessibility is a disability rights idea.
It has to do with the fact that societies plan for some people to be there, take for granted that some people will be there, build everything physical and social around the strengths and weaknesses of that kind of person. And then other people aren’t planned for or taken for granted and there’s all these obstacles to our participation in society. We are the disabled people.
Accessibility is about making it possible for everyone to participate by removing those obstacles and barriers that shouldn’t be there, and by building things in ways that make it as easy as possible for us to be there and participate and be part of things.
That isn’t the world’s best description but I’m trying. Most people if they’ve heard of accessibility they’ve heard if things like curb cuts and wheelchair ramps and elevators. Things that apply to physically disabled wheelchair users mostly.
Cognitive accessibility is different. Most people haven’t heard of it. Many physically disabled people who are big on physical accessibility don’t even believe in it. It’s part of ableist bigotry against cognitively disabled people.
But it’s huge. Just like physical access it can be life and death.
And for many cognitively disabled people, TIME IS ONE OF OUR BIGGEST ACCESSIBILITY ISSUES.
You need to give me time to think. Time to understand. Time to respond. Time to have a back and forth conversation. Time to put things together. TIME.
And the time needs to be without pressure. Without judging me for needing more time. Without making me explain why I need time. Without treating me as demanding. Without acting like your time is so utterly valuable that to give me even five seconds is a giant favor. Without acting like cognitive accessibility is a favor at all. Without all kinds of bizarre conditions in order to qualify as worthy of your time. Without treating me like I’m asking for special treatment. Without using the fact you gave me extra time to demand other things of me later.
None of those things are how real accessibility works. Because all of those things treat me at best like I’m only welcome under certain conditions. Like I’m only welcome because you’ve decided you want to be nice to me today. That’s not welcome. And it’s not accessibility. A wheelchair ramp that disappears and turns into a staircase whenever a wheelchair user feels grouchy isn’t access either.
Time isn’t always easy to come by. But we can’t just make our brains run the standard way. We need more time than usual. Or we need the time we have used different than usual. Or something.
Not getting enough time is such a common obstacle to access for such a huge and diverse group of people. Yet time is rarely seen as an access barrier. And when people bother to give us the time we need, it’s treated like a favor. Or like something that isn’t actually necessary. Something that wouldn’t be a problem to take away. And it’s our problem if we can’t keep up.
I’m dealing with huge timing issues in the hospital. It affects everything from comprehension to communication. It’s interfering with some of the most basic parts of my medical care. I’m getting exhausted, scared, and discouraged trying to cram my abilities into a speed that’s impossible for me. And half the time I’m not even getting the time to explain what I need when it comes to time: people force the conversations so fast it distorts communication at best and they can’t even tell it’s happening.
I’m not the only one. I had a roommate who communicated complex thoughts when we were alone but couldn’t get three words out around family and staff before they’d all decide what she was thinking. That’s a lot of things including lack of respect, but part of giving her respect was giving her time.
Meanwhile I’m always getting lectured on how I don’t respect people’s time because I make timing mistakes directly related to being disabled. >_< From people who rarely give me time enough to understand or respond right to anything.
People turn my access requests into weapons against me. Requests for time become ways to paint me as demanding or entitled. If I’m granted time, people will later explode at me if I still don’t understand.
“I GAVE YOU A WHOLE HOUR OF MY TIME AND I’M NOT ANSWERING ANY MORE QUESTIONS!” A doctor who was paid for an hour of consultation about choices between different styles of feeding tube. Later he happened to be assigned to me for a totally unrelated procedure and apparently the “favor” of his paid time meant he couldn’t answer a simple routine question any patient would ask. All I needed to know was whether I was getting Propofol during the procedure. Instead he wouldn’t even listen long enough to find out what I was asking. And I got shouted at just before a stressful procedure taking place in a room that gives me PTSD flashbacks every time I see it. I ended up with somewhat dangerous cortisol issues all because he happened to be the same doctor paid to spend an hour with me once.
People go out of their way to tell me what a hassle it is to give me any of their time at all. Even when they’re paid good money for it. The same people go out of their way to insist I don’t value their time enough. Often based on a false equality. But also based on rules I can never predict or follow because they require cognitive skills I don’t have.
This leaves me in the permanent belief that my time has no value at all. But that everyone else’s time is worth something close to infinity.
Mind you, until recently, using words or ideas like “time being worth something” would never have occurred to me. I’m still not sure it sits right in my head. And I’m not sure if it not sitting right is for a good reason or not. It just isn’t a way I think of time. Not the way they seem to mean it. Of course I barely understand time at all. But this way still confuses me.
But I do understand the concept of everyone always has to take time for me. And that this is a huge waste if their time. Because I’ve heard that my entire life.
I don’t actually buy the idea that my trouble processing time makes me a bad person who doesn’t understand the huge value of everyone else’s time. Or a person who needs to be condescendingly taught about such things. Because that just doesn’t pass any of my mental smell tests. But the way I’ve been treated and what I’ve been told leads me to feel that way.
So one barrier to access for many of us is time. But an additional one is the belief that we barely deserve the time we get, don’t deserve more, and are just taking away from everyone else’s much more important time. These add together until we get less time and lower quality time (like when the person spends the whole time letting you know you inconvenienced them), when we need more.
I need time.
But this is more than a personal need. It’s an accessibility issue. It changes how I’m able to participate in society. Right now it’s messing up my medical care. It’s a huge important deal, not an afterthought. And I’ve rarely met anyone with developmental or cognitive disabilities where time wasn’t an obstacle to access.
So giving us time, when it’s possible, isn’t a favor. It’s an access issue. And be real careful declaring it impossible, because there’s usually a solution. A lot of the time when people say it’s impossible they really mean it’s not important to them or they’ve always planned their time with a lack of time for us just built in. I only mentioned possible because there’s some people with cognitive disabilities whose own time issues make it hard for us to do this for someone no matter how hard we try. But for most people that isn’t a problem. And there are often solutions when time is limited. You just have to start from the assumption this is both important and possible.
Time is certainly important to those of us who need more of it. And it’s an accessibility issue just as important as wheelchair ramps, curb cuts, or Braille. It seems like such a little thing but nobody wants to give it.
I appreciate all the offers of help, both personal help and also offers to help with the overall situation affecting lots of people. I appreciate it and am more aware of it and grateful than you may know.
I am able to write exactly what I write, when I write it, where I write it. Sometimes it looks like I should be able to respond. If I can I will. I’m operating at top capacity. I can’t do more. I have reasons for every way things end up. But I don’t usually have lots of choice how things end up. So I can’t always respond even when I want. And most things I want to write for any reason go totally unwritten. Or written wrong.
So here is what I have.
Please contact my DPOA (Durable Power of Attorney for Healthcare) Laura Tisoncik. Her email address is firstname.lastname@example.org. Also the Autistic Self Advocacy Network (ASAN). Or possibly Anne Corwin who is my other DPOA.
I’m putting all my effort into communication right now. What you get is my best. My brain works how it works. Not always to my own wishes or benefit let alone someone else’s. I can’t do more. I wish I could.
So please contact these other people if you want to help me and others. I am sorry I can’t always reply more directly, individually, quickly, or effectively. All these things are part of having developmental disabilities. Some of them are other things too. They’re part of why people like me have trouble getting help when we’re in trouble. Everything is designed like the obstacles we need removed don’t even exist. Then people expect us to function in ways we can’t.
Anyway I’m exhausted and want to write more but need to post this. Thank you.
I rarely get to talk to my friends. Even online. We rarely keep in touch. We all have huge trouble doing that. It’s the worst part of inertia.
I hate the myth that we don’t or shouldn’t need friends. It’s fine not to. But it’s totally okay to want and need people in your life and most people do, even most loners.
I hate the community norms in some places where it becomes almost a macho one-upmanship thing to show how unsocial you are. Like… I once described it as “A whole bunch of people socializing by competing about how much they claim to not need to socialize.”
It’s okay to want to socialize.
It’s okay to socialize.
Never let a label determine what you think you should want.
Not even a label you like or that is useful to you. If it starts ruling you instead of you using it something’s wrong.
Someone once told me “You’re allowed to want people in your life, you’re just not allowed to need them.”
I knew where she got that. And it was not from someone who said “allowed”. It was from someone describing their own experience only. But somehow other people turned it into “allowed”. And that’s bad.
It’s okay to want people in your life.
It’s okay to need people in your life.
Both of these things are equally okay.
It’s okay to like people.
It’s okay to love people.
It’s okay to socialize however you want to as long as everyone involved is really okay with it.
There’s a terrible kind of isolation very few people admit exists.
In systems like the developmental disability system sometimes all the people you ever see are staff.
For those unaware staff doesn’t mean what it seems to mean to most people. For DD people having staff means having people with lots of power over you, it’s the people who are supposed to be taking care of you. But they may or may not be. And whether they’re amazing or terrible and helping or hurting or whatever — they have power over you that you don’t have over them. Nobody can wish that away or make it go away just by wanting it to or trying. The power is built in to the job.
And sometimes every single person I interact with for months is staff.
I actually usually like staff.
They’re not the same as friends.
Not the same as strangers either. It’s a personal relationship and pretending it’s not doesn’t work any more than pretending it’s a friendship works.
But it encloses you in the agency.
It wraps around you.
If all you see is staff.
All you see reflected back at you has an agency distortion.
Even if every single person individually sees you as a person.
This still happens.
It’s just not the same as having friends.
I started having friends again.
Ruti. Joelle. Cal. Anne.Paragraph
I was a person again.
I realized I wasn’t anywhere near a horrible a person as I thought I was.
Lots of other things too.
I realized my love meant something to other people and that other people loved me.
Both of those things are important.
So many things about myself and my friends and friendship and being human.
And I started to feel human.
A little bit.
I felt like I’d woken up from a weird sleep.
It’s how I feel around people who just want to be around me and I want to be around them.
That’s why Anne and Igor and everyone are so important. Even when we don’t see each other online or off for years. We want to but we can’t always and sometimes it hurts. But knowing each other at all counts for something. And I wish we could all communicate with as many others as we want to as much as we want to in the ways we want to. Because I’ve missed years of contact and I’m sure the others can say the same or more.
This picture isn’t just about pain, it’s why I wanted to post it again.
It’s about love.
It’s about being human.
I have a different kind of relationship with each of my friends.
With Anne it’s partly built on so much of our lives and brains working the same way.
If you ever read the book Loud Hands I have an untitled chapter. It’s about Anne. I can’t do us justice here but that’s the closest I’ve come to doing our friendship justice anywhere.
Anyway we read each other underneath everything. The words almost don’t matter. We exist and resonate.
And for that friendship that’s how it works.
So the picture is about resonating and friendship and love and humanity and all kinds of wonderful things.
Those are all in there too just as much as pain is.
I want to post that picture to celebrate knowing Anne and friendship and love in general and the amazing luck of finding those things at all, for a lot of us who never expected it or even really knew what a friend was. And the importance of all this when you have it.
And so many more things I can’t name.
There’s a lot in this picture that’s really beautiful about friendship if you know what you’re looking at.
The pain isn’t separate from it either. It’s not some extra thing. If it’s part of my body right then it’s part of the picture too. But so is the love and the resonance and the catness and all the other things. They’re all wrapped in together because that’s how life works. It’s all there underneath if you know how to look for it.
I love all my friends whether I named you or not and you’re all important to me and I care about you and wish we could interact more in whatever way worked best for us.
Roses are red, violets are purple Sugar is sweet and so’s maple syrple
That quote will never not be hilarious to me.
Little things matter.
Little things people consider frivolous matter.
Sometimes they matter more than most things.
They’re part of the humanity that I get denied every day.
Just being allowed to care about shit like this.
Being allowed to have little things like this.
You only notice when people start trying to take it away.
Trying to make it sound like it’s not important to have things like this in your life.
Sometimes they do crap like decide this is all your life can be, and that’s all kinds of fucked up.
But other times they act like you can’t have this.
Like you can’t or shouldn’t care about things like this.
Especially when you’ve got lots of serious shit going on.
People act like you should be super-serious all the time.
And only care about certain things.
And care about whatever the hell they think you should care about.
And so you hold onto shit like this.
Which is why it pisses me off even when people say that people shouldn’t post their dinner on social media.
Maybe their dinner matters.
It’s actually little things ike this that make up everyone’s life.
Little bits of the world.
Noticing them matters.
Living them matters.
Life without them, especially forced life without them, doesn’t work well.
People need things like this. Different people need different things. But everyone’s got things.
I’ve loved the maple syrple line my whole life. Not stopping now.
When people share things like this with each other it’s being social about little things we care about.
And people who like to do that like to do that, and that’s fine.
And people who like to keep it private, that’s also fine.
It’s just, there’s all kinds of ways to deny someone’s humanity.
And denying people these little weird bits of life, it doesn’t sound like much, but it does deny part of your humanity.
And it has a bigger impact than you’d think.
So think twice before you make fun of people for posting things like this, or pooh-pooh it to people, or say that people who like things like this are stupid or something. You don’t know who you might be hurting, or how deeply.
People don’t understand what gets taken away from you.