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cw food

I remember when I got my crutches for the first time and they were cyan, one of my favorite colors, with black too, and I remember being so excited to use them and then when I did use them people looked at me strange like “what happened to you?” and “do you really need those?” but with their eyes and when I didn’t use them because people think I didn’t need those they would come up to me and say “why aren’t you using them?” as a “gotcha,” if they are the disability police and they know with their x-ray vision that nothing is wrong with the bottom half of me. I would go to my advisor’s house and try not to make a fuss and have only rice because it was the only food that wasn’t spicy, even though I’m sure the Indian food was really good, and I wished I could have some, and when they all asked “are you sure that’s all you want?” I said yes so confidently like I was intentionally going on a diet full of plain rice, and I didn’t even finish all of it because I can never finish the last 2 bites of my food and when she offered me “chocolate liquer” a word which I would endlessly repeat and laugh at for months to come I had to decline because I didn’t want to make a fool of myself and think it was actually chocolate syrup when really it was just alcohol and I hate alcohol so she replied “Ira you are so austere” and then I had to think about that until I came home and looked up the word “austere” which sounded like something someone would say in the 1920s and only then did I realize that it was a sort of insult like I was plain and blunt at the same time and how dare I not drink the chocolate liquoer (that’s how I pronounce it) and even on regular days everytime someone stopped at my office and they were making coffee they’d ask me if I wanted coffee and I had to say “no thanks” everytime and I think I said “no thanks” at least 50 times once a year and they couldn’t understand that coffee made me sleepy and then when I went to a conference I tried all three combination of mobility aids: Two crutches (too crowded), no crutches (stand-on-one-leg-while-no-one-notices-at-all), and one crutch (not supportive enough to be effective while also getting as much ableism as the two crutch strategy) and everyday had a new awful twist because the first day was when I went up to a poster presenter and they looked at me with my 2 crutches when I’m happily asking to hear the poster summary and instead they looked at me from my feet to my head and went “…ooof” like this person had seen a dying wounded puppy on the street that wasn’t going to make it and I just had to stand there and smile and hope they would start explaining the poster and of course regardless everyone stared at me and the second day I had no crutches and went to look at a poster and a professor went to look at the same poster but instead of caring about the poster he just stopped and looked at me and did a short police interrogation and simply stated “I saw that you used two crutches yesterday but you are not using any crutches today” and he just waited there and completely left off the “Why?” that he was clearly saying with his face and I had to make something up on the spot and I wish I did a “got him” comment back but instead I just explained it in the way I could at the time which was “I have a cyst in my foot” and at least I immediately walked away instead of acting like that was a completely reasonable thing for someone on my committee to say to me and also I stood on my good foot for hours that day but pretended like I had weight on both my feet and so somehow I got a cramp in both of my feet at the same time and had to find an empty hallway to take my shoes off and walk (crippleds can’t do that they say /s) and I made a mistake because the hallway wasn’t empty, instead the hallway had a waiter hanging out in it and they decided to stand 6 feet away from me (it wasn’t even covid times so I think this was disabled contagion thinking) and just stare at me like they saw an alien or ghost as I simply walked around in a small circle even though it hurt my foot, so I could stop having terrible foot cramps which was almost worse than my foot pain for that day (because the stand-on-one-leg strategy really does work if you ignore the side effects of it) and then the last day I was both continually stared at but also scoffed at because I had one crutch so it somehow looked like I was faking even more than I was on the first day with my two crutches but I was constantly worried about stepping on someone’s foot with my two crutches because it was super crowded everywhere and no one was giving me space to use both crutches, and so I tried to use just one crutch because that was easier to not accidentally stab someone’s toe with but really the one crutch was almost useless and also brought the “oofs” and the stares of disbelief, and meanwhile when I was navigating all of this, the only other disabled person below 60 years old had a service dog and I got to witness a person sitting in the row in front of me at a lecture take a picture of this person’s service dog without their knowledge and post it on a social media website because it’s not like the service dog had a tag on it with medical and personal information or anything (it absolutely did) and it’s not like the dog was working or anything (it was) and I don’t understand why people need to post pictures of not-their-service-dog on social media.

The first time I told someone I was autistic I got the “everybody’s a little autistic” quote and I didn’t know how to respond and two days later I sent her a video of “5 things not to say to an autistic person” and I think it really did the trick but a lot of other times I am told that I am “very high functioning” but honestly I haven’t disclosed being autistic to that many people so I’ve only heard all of that maybe a handful of times and I haven’t gotten hugely terrible responses like that except for those two phrases but I don’t disclose to people because I don’t want to hear those phrases and I don’t want to hear about their ”nephew with autism” or “sister with autism” or “kid with autism” because I’ve had enough “with autism’s” in my life and I don’t need to hear anymore of them and the funniest part is when my username literally says “autistic person” in it and when people refer to me they would still say “with autism” as if that’s somehow more acceptable even though that’s literally not what I call myself because people are incapable of respecting what someone likes to be called like using they/them pronouns properly even though people use them all the time, like I am now, or like saying “Someone lost their umbrella” and then a few minutes later still misgendering their nonbinary friends and family, and people genuinely think that if they have “good intentions” they are not responsible for literally any harm they cause and it doesn’t make sense to me because there are so many stories of trans people misgendering cis people and having them get super upset with them but then when a trans person is like “hey can you please not misgender me like you’ve been doing for an entire 2 months and I’ve barely mentioned it at all” they’re like “Why is it a big deal, I don’t care when I’m being misgendered” as if they have the experience of being constantly told they’re a gender that they are not, constantly misgendered from the moment they were born to like 15-70 years later and then finally told people “hey that’s not what my gender is and my pronouns are this now and can you please call me that” and then people still ignoring your real gender and pronouns and existence for the next 1-20 years.

I remember when I tried ignoring my foot pain for at least a month and everyday it would get worse and everyday I just hoped it would go away and when it didn’t go away I didn’t realize that the only option was to go to a doctor and when the doctor completely dismissed my symptoms, the only option was to hang out in the apartment for a few days (luckily it was a weekend phew can’t miss work right?!) and stop walking anywhere and then when it got a little better I was like “I guess I just have to handle this now” so I tried all of the insoles, and it was better than nothing, but it didn’t help much and the original terrible foot doctor told me that I should get a “rocker” shoe so I tried a rocker shoe and it made my pain immensely worse with every step so instead  I said f*ck doctors because all they did was tell me it wasn’t a big deal and so I found shoes that made it manageable but still painful and then my family was like “but what about tennis though?!” and I recognized that everyone who had an opinion on my foot had their own problems which weren’t my problems and I was constantly asked “how my foot was” by my supervisor and after answering that 10 times and sometimes placating her I decided to say “This is permanent and this will never get better” and that mostly stopped her asking about how my foot was and I know it was meant to be caring but instead it was just invalidating because no, I shouldn’t have been doing all of those things, and yes, it did hurt, but how the hell was I supposed to do my work when it involved a ladder and a tiny hallway and room where I could barely use my crutches? Telling her that I’m in pain wouldn’t make a difference either way so instead I would wait until I really had to pee to go to the bathroom because the bathroom was a whole 20 steps away and that was a lot of painful steps and the worst part was it included a giant heavy door to push and somehow I always used my painful foot when pushing the door open and my foot was not a fan but yes I was doing okay, everything’s totally fine here, I am totally not in pain because I’m used to it and it’s just my life now and oh no how am I going to get from the parking lot to the building I work at because that’s a whole 0.2 miles and it takes 25 minutes to wait for the shuttle and I always miss it right when I park and it’s really annoying and the bus is super loud so I have to wear headphones and even the headphones don’t prevent overload because somehow I can still hear a conversation from 8 rows behind me and I feel like either Superman or Daredevil on the first day he got his super hearing for about 5 minutes and then I realize, no I’m not a superhero, I’m just autistic and have bat ears and that the only thing bat ears help me with is knowing that the microscope light is on when no one else can hear it and that’s exactly why we’re getting electrical noise messing things up, but I’ll wait for 20 seconds while people troubleshoot just in case they can’t hear that super loud buzzing sound that happens when the microscope light is on that I hate so much, and sometimes when people are troubleshooting electrical noise there’s a bunch of loud sounds so I wear headphones and once it got so bad that I went into an acoustic chamber and closed the door in the dark and it was nice for about 2 minutes and sort of sounded like the ocean and then my tinnitus slowly got louder and louder and louder until it felt like maybe what someone hears after they get severely injured and I opened the door like I was gasping for air but then immediately flinched at the super loud sound that I don’t understand how other people are not affected by and for sure my advisor has to have hearing loss because even allistic people should be in pain from that volume. It took me an entire 4 years after I acquired my foot disability to tell the professors how my life really was and how things were painful,

and this was after my family and spouse continually asked me when I was going to get surgery on my foot because there was a surgery but it was extremely painful which is why you have to be knocked out for it, but you don’t have to stay in the hospital overnight and I convinced myself based on everyone else’s obsessions with it that it was something I should try because I felt like I tried everything else and even the surgeon was surprised that my disability was “causing so much pain” because the venous malformation is “only 2 cm” and I wanted to yell right then and there “HOW BIG DO YOU THINK THE WIDTH OF MY FOOT IS” because I have a very narrow foot with high pressure points and guess what, that ginormous tied up bag of veins was on one of those pressure points but why would I assume this surgeon would know anything about feet because when I asked him if he has done this in feet, he just looked at me and said something along the lines of “I do this procedure for a lot of people” and bud you may have well just said to me “no we’ve never done this on the bottom of the foot and this procedure is going to be really great for the med students to try” because that’s certainly how it felt after the fact, not to mention that I did my own research and asked about estrogen levels affecting the size of the venous malformation, and the surgeon was adamant that estrogen levels wouldn’t affect the size of the malformation when I absolutely knew it changes in size (based on literal journal articles I read up on) and was not one of the “normal” malformations he looks at – you see, most venous malformations are genetic and not caused by an injury, and my malformation was caused by one of the most absurd yet mundane things possible – pushing my foot on a small exercise bike pedal too hard before I went to sleep. And you see, everyone in my life asked how it happened and assumed it was a sports injury and told me how “athletic” I was and when I told someone how it happened, someone who actually listened to the words I said, she was very concerned for her overall well-being, and when I told her that my foot surgery didn’t work and I will have this pain for the rest of my life and there’s nothing else they can do (except “try again” but why would I waste another 3 grand just for a surgeon to say that he couldn’t find it even though it was clear on the MRI scan which happened 2 weeks prior and that “maybe it’s estrogen” after he flat out told me at the consultation that it couldn’t possibly change size) she stared at me in abject horror as if her life was flashing before her eyes and realizing that no one is spared the potential of pain that cannot be immediately solved by current medicine, even when there is a treatment available. I still can’t believe that the surgeon basically just said to me that I could try again in another 6 months as nonchalantly as he did, as if it would just be a casual thing instead of the recovery that I had, which was me with a hugely swollen foot stuck in my apartment for 2 weeks using a knee scooter and playing Super Hot in VR while sitting in a chair and only being able to get to level 7 because I couldn’t dodge well enough while sitting down. Regardless of the money, I’m not sure I would want another 2 weeks of swelling and then after that, which I was not warned of, having 2 deep bruises on the bottom of my foot that were not where the venous malformation was and basically having an entire 3 areas on my foot where I couldn’t put weight, which meant that without crutches, any which way I stepped (and I’ve tried so many ways – side step, backwards, lunge, small steps, high raise steps) hurt every single time. I love how you can have abled people tell you that there’s a surgery to “fix” your problem and be all gung-ho about it and when you tell them that it actually made your quality of life significantly worse for at least 2 months afterwards, they don’t take any responsibility over it and just act like they’ve been against it all along or that they didn’t play a part in convincing you in the first place.

cw needles

Abled people place way too much faith in healthcare, and even some disabled people do too. Medicine still has such a long way to go and you wouldn’t ever know that unless you had a disability and talked through treatment options with physicians and so many “options” are just so grim. You know what my surgery was? I call it a surgery, but what they do (this is a new technique by the way, and fancy, and the person I saw specialized in this technique and still couldn’t do it) is they literally stick a needle into the vein of your ankle and just move it through your entire foot all the way down to your forefoot – you know the most ridiculous thing about all of this? My family member didn’t even know that’s what the surgery was – they thought I was getting general anesthesia at a hospital for a local injection right at the site of the venous malformation. How could you think that after seeing a foot swell up giantly?! How?! And once they get the needle to the spot (my forefoot near my 3^rd toe) they inject something that’s basically like a glue that’s supposed to clog up that vein so it reduces blood flow – because the pain I experience is from the blood flow of those twisted veins all clumped up together. So in an ideal world, if this worked, they would’ve injected me with this glue substance (which they didn’t do because they didn’t find the malformation) and it would’ve made me be in extreme amounts of pain for at least 2 weeks if not longer!! And that is supposed to scar up the vein to then let me be in less pain. It’s so ridiculous as a treatment that you can’t make it up – and yet, it’s a treatment that actually works more than a lot of stuff out there for other disabilities. It just happened to not work for me because doctors don’t read scientific literature about estrogen receptors or believe their patients. And even if it does work – I was told it can take having this same surgery 2-3 times (every 6 months or so) to actually prevent pain completely! Yea what “advanced” healthcare we have. Abled people are really delusional when it comes to what they think medicine can do for them honestly. And unfortunately I get to be that “hard stop” where they have to face their impending disability and mortality and they really, really don’t know how to deal with it. I think they need some seriously better coping mechanisms.

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• autistic adults
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