CN: emesis, classism, fatphobia from doctors, medical negligence, disordered eating
(Note from Ania: This post by Sophie was written with the assistance of a speech to text tool. There may be some typos, which I haven’t been able to correct yet. I will come back and edit them as soon as I have the spoons to devote to it.)
We live in a world of experts. Scientists. Astronauts. Doctors. Computer programmers. Politicians. Teachers. Husbands. Wives. Parents. Men. Woman. All the people. Everyone you see around you is an expert in their field, even if we all haven’t gone through higher education to obtain a degree.
But you don’t need a degree to be considered an expert in your field. In a lot of cases, the people who will know most about a thing are the people living with and dealing with the thing. And for the most part, people accept these masters of the universe in their own chosen specialty.
Parents are masters in parenting.
Women are masters in being women.
Men are masters t understanding men.
Even children are masters at understanding children.
Social justice warriors are masters at navigating the system and assisting people in distress because of the system.
Marginalized people are masters at knowing what it means to be oppressed because of who you are, or what you believe in.
I am sure that you, reading this, are a master in your chosen domain.
But I cannot speak to what it’s like being a part of that domain. And it’s not why I’m here today, writing this. But I did want to make sure before I began that you understood that I SEE you. You are not invisible to me. And I am quite certain that you will have experienced some or many of these things that I want to speak about. I know that your pain is real. But I must focus my thoughts and speak of the things that I personally know, which unfortunately isn’t every single person on earth, much as I wish I could sometimes.
So let me try this again, from the beginning.
Each and every one of us is a master of our own domain. We don’t all have university degrees to tuck in under our belts, but we do all have our passions, and qualifications. Today’s words will focus on one particular subset of the human culture: Being disabled, and the invisibility that too often comes with it. Because while it isn’t the knowledge I would have wanted for myself, it’s what I have become educated on, by means of the circumstances I’ve been thrown in.
It is in that light, in that guise, that I introduce myself to you.
Partially human, Disabled.
Often times, the most difficult part of solving a problem, a social problem or others, is about framing it in the right way. If you are dealing with a situation, but you misidentify the source of the conflict or barrier, then any solution becomes impossible, or at least incomplete. The same is true of discussion of disability justice and issues of equality.
Many of the conflicts that arise between abled communities and mindsets, and disabled ones step from different framings of the problem. While many different constructs and models exist, the two mainly accepted ones are the Medical Model and the Social Model.
What does my future hold?
For many people this is a question of awe and wonder. It’s exciting and even inspiring to think about the future. What could the future hold. What will my mark on the world be. What amazing things can I do with my time. Then there are things like bucket lists, dream vacations, a certain thing someone wants to do before they die, we could go on. I am sure you get the picture.
While I don’t know everything about my future, and it would be disingenuous to say as much, I do know this. I know that my future holds pain. My future will always hold pain and suffering. I get to live the rest of my life (barring any sudden drastic leaps in science, technology, and medicine) in pain. In daily pain. Not only physical but mental and emotional pain.
My future is pain. Of course as I said before I don’t know what the future holds, no one can predict the future or often times even have the faintest idea of what will and will not happen. However I do know that whatever happens to me, wherever life takes me however long that is, and no matter what gets done or doesn’t. My future will have pain in some aspect or another. Daily pain.
I have daily physical pain, from the Fibro/ME catch all diagnosis for you have pain and we don’t know why. To my more specific things like the degeneration in my knees, chondromalacia patella, patella femoral joint degeneration, osteoarthritis. Two knee surgeries later and being told I need new knees, but that I will have to wait until I am older. To the bursitis in my right shoulder from cane use because of my fucked up knees. My carpel tunnel which I have already had one surgery for, making my main hobbies and interests already harder. Using my arms and hands and having to take constant breaks while painting, or doing models, or even gaming. My dowagers hump, which means my spine and neck are just always fucked, no matter how good I slept, if I use my neck pillow. I do daily at home Physical Therapy because that is all I can do to give my neck/shoulders/spine some relief and the change at not getting so tense and bound up that my whole day is rolling with a disadvantage.
To the pain that is my entire body, revolting at the fact we are still existing. Just every single joint in my entire body hurting, pulsing with pain or even just screaming at me while I am doing literally nothing. A bumped arm or toe that can send me into bed for 3 hours in excruciating pain. If not from the pain from the bump/wound, then the crying and bawling that happens because the pain in so intense for however long, then I have to lie down anyway because I have a migraine. The fact that water from a shower head hurts like hundreds of tiny stabs and punches all over me. I also have nerve pain and damage on the right side of my body from having Shingles outbreaks at least 6 or 7 times within a few years, and another more recently. Nerve pain is really fun like electric shocks and a very stingy deep pain that is miserable and doesn’t take well to anything I have tried.
Pain also gives me amazing nausea, so I am either nauseated because of body pains, or maybe because I haven’t eaten in so long because of being nauseated, or maybe I am nauseated because of eating. Then when I do eat I often get more pain because of eating. I have a sliding hiatal hernia, and refractory GERD. I also already have esophageal damage, not only from being a former bulimic but also because it took a full year of tests and procedures to find out what was making me get sick and vomit almost every single day for multiple years. IBS is also super fun and causes me all kinds of pain and discomfort, which also ties into my anxiety, since a LOT of people with anxiety disorders also have IBS.
My own disabilities make me more disabled in so many cases. How hecking effed is that?
I also have daily emotional and mental pain. The anxiety alone, making me tense adding to my physical pain. The anxiety is about anything, and everything. The bouts of agoraphobia that cause me more stress, mental pain and anguish even just thinking about leaving my house. I have nightmares at least half of the days of the week. This adds more stress, anxiety, maybe even triggers my PTSD. All of this adding more to my mental state, emotional pain and then all making my physical pain worse. It’s this constant swirling mass of things that keep feeding each other. Physical pain adding to my depression, the depression making me less likely to do things I enjoy which adds to not only making the depression worse but my pain as well.
PTSD is it’s own beast as well with the fact that flashback can also trigger body memories and pains associated with that. Or even just the stress of the nightmares, flashbacks, the intrusive thoughts which make me tense up. I deal with muscle spasms on the daily as well be it from pain, tension, stress, or just more body weirdness that doesn’t have a name and probably just gets lumped into my Fibro Dx. Which doctors have told me is a catch all for “you have any number of these symptoms and widespread pain and we have no idea why”.
Constant anxiety over how much I am being a burden to everyone I care about. Constant anxiety about the fact I have been told I talk too much about my disabilities. Can’t I just be happy? Can’t I just not talk about things that affect my daily life. The anxiety about finding new doctors and trying to access new pain treatments, or new options in general. Trying to seek out help for my bodily pain which adds to my anxiety more because I have to find new doctors, make appointments, do that first meeting. Bring all my medical history over and hope they even glance at it rather than just at me. Then these things just add to my depression more when appointments with doctors go terribly, either because they can’t help me or because of the more sinister shaming that they love to do so much. Or maybe another test is “normal” and we are back to square one.
Another doctor dismissing me with “go diet and exercise”. Another addition to my daily shame for existing as a disabled person, for existing while fat. Another addition to my emotional pain, the distress, the hopelessness, my depression, which in turn swirls and adds to everything else. Knowing that my future is pain, and will contain pain is hard. It is hard to keep wanting to go when I know this for a fact will a part of my daily life. Sure I don’t know what else my life will hold, but I do know it will be all through this lens of pain. A large spiky bubble that is my constant companion. Ouch, pain here, ouch pangs of sadness here, fuck I just got triggered, ouch more emotional pain, more crying, crap now I have a migraine. A cycle that is not always the same, but is constant none the less.
Every single day of the rest of my life will be in pain, and I don’t know how I feel about that. It makes living hard, it makes gaining inertia hard, makes having fun or even a “not shit day” hard. It makes everything harder and I am tired, and I want a break.
I want to talk about accessibility in public spaces.
Think of this, that moment when my favorite restaurant reopens in a new location and I am super excited. Then I get there and look at the seating and are already starting to dread the seating process. Walking past all those booths knowing how small they are knowing I can’t fit in them. Bemoaning the fact of even having to try because of the people I am having lunch with. I try anyway to sit in said booth, they don’t work. I get to be fucking embarrassed and hate myself and frankly not even want to eat because fat people aren’t allowed to eat. The waitress alone is staring enough that I want to leave.
We go to a table instead, the one table that was accessible, since for some reason all the not booth seating is up some fucking stairs. Great. We sit at the table, those chairs are always so fucking crap. I am wishing I had brought my walker with me since I know it won’t randomly collapse on me at any moment. I am wishing I wasn’t here even more now. We sit we eat, I go back once, all the accessible seating aka the one table, is taken. I never went back and still haven’t to this day.
Existing as a disabled person on it’s own is a nightmare with accessibility, especially in public places. Existing as a fat disabled person, is a fucking turbo nightmare where everyone is also staring at you very obviously and sometimes sadly unsubtle. Even though you know they think they are gawking subtly which they aren’t. I see you, I see you every single time. As a person with PTSD and anxiety I am hyper aware of my surroundings at all times and I am constantly watching and I see you, I hear you, and it hurts.
Small local shops can be and are usually in my experience the worst when it comes to accessibility. Especially since I live in a small town. I definitely want to support local businesses, especially the local bookstore, the local comic shop, I want them to stay open and thrive. However when your space isn’t accessible I physically can not go to your establishment. Or when I do try I am not there very long and probably buy my one thing as quick as possible. When I can’t use my walker in your store that is a problem and relegates me to only going on much better pain days. Even if it’s a good pain day and I am just using my cane, I still take up a lot more space than other people. Not just because of being fat but needing space to use my cane which is on the side of me. Bumping into things, having stuff on the floor that my cane catches on makes me not want to come back.
I understand that I am the minority in this, but it still hurts. It really fucking hurts when I have lived in the same town my whole life, these are the shops I grew up with, the shops I love and want to support. However I just physically can’t most of the time, not anymore at least. Maybe if you had a bigger space and spent more money on room to spread things out and make them accessible then disabled people could shop there and you would make more money. Only this is reality and not how that works. Especially when many disabled people myself in particular are on a fixed income or are barely scraping buy as is. I know I can’t make up that deficit, so I just shop online. Anything I want delivered right to me, no fuss with walking, bumping into things, possibly hurting myself. No worries about anyone gawking at me making faces, saying derogatory things to me or about me.
Even in a big chain store up here like Barnes & Noble which has a very nice large store and is almost always fully accessible. Certain times of the year they cram so much stuff into that store I can’t even get around with my walker. So I either prepare in advance like around the end of the year and those holidays I remember to not bother. Sometimes I find out when I get to the store, and I just turn around and leave. Which is really fucking frustrating when you don’t leave the house much. When I do leave and then don’t actually get to do the things I want to it hurts. These are things that will help me feel better, give me a small bit of happiness, or even can make me feel accomplished. It sucks, it feels really bad and can even add to my feelings of worthlessness for “never doing anything”.
If you aren’t disabled, look around next time you are someplace, a store, a coffee shop, wherever. Think about accessibility, in public spaces, in the spaces around you. Think and look and critique. Listen to disabled people when we talk about this stuff. About how inaccessible places can be in public. ADA or not there are loopholes for businesses and establishments, and there are a lot of us who wouldn’t even know how to file a complaint and would probably not have the spoons too anyway.
Extra side tangent about other people in public spaces.
Other people can really be the worst part about being disabled. Oh and the worst part about being fat. When I am trying to get by and say excuse me and you look at my like I am a hydracorngaroo, well okay, I will just always take the long way everywhere since people can’t be bothered to let me by. The amount of times I am very obviously using an assistive device and people just run into me, my walker or are walking close enough to me they kick my cane, I could get seriously injured. People couldn’t care less, because they are doing a thing, they are probably in a hurry, and who cares just some fat disabled person. You know what I am are probably faking anyway cause fat people are just lazy. (Intense sarcasm note here just in case)
“Excuse me, I am sorry. Is my mere existence such a fucking affront to you?”
That is what I want to say to people, to stand up for myself. Instead I hopefully am not hurt and just leave and go back into my car where I can cry and or rage (possibly both) in peace. I just wish people would give things a tiny bit more thought, just for like 15 seconds think about what you are doing. I wouldn’t run shoulder first into anyone ever, frankly I am wondering why are you that close to me?! Knocking over people and running into people in general is shit. However doing this to a disabled person, could literally mean a trip to the hospital or a week of intense pain for me.
Like when one winter someone rammed their cart into me while I was walking to my car and I did fall, and I was so messed up for a week after. Their apologies meant nothing, their intentions meant nothing. I was in extra pain for over a week, I didn’t get to go to Therapy that week because I couldn’t walk even around my house let alone drive anywhere.
Think, look, be aware, take a few seconds and just look around and freaking be careful around people. So many people with invisible disabilities who don’t even use assistive devices can get hurt. So like just stop and look and pay the fuck attention when you are in public, please.
CN: Ableism, Police Violence, Sexual Violence, etc.
Scrolling through my Facebook feed late at night, I came across a Jezebel article on the subject of the Fascist authoritarian in control of the US. In contrast to all of the serious articles going around this week, and especially this weekend after Trump triggered a constitutional crisis with a hateful law targeting Muslims and immigrants of color, the jokey nature of the headline and article stood out. It was mocking the newly sworn in president for an alleged fear of stairs.
To most people, the idea of a grown man being afraid of stairs seems silly and joke-worthy, but it made my stomach drop.
You see, in a sense, I am afraid of stairs.
Every day seems to bring a new terrifying development in the Orange PEOTUS’ Cabinet of Horrors. Between white supremacists being appointed to important positions by a man calling for the registration of minority religions, climate change deniers being appointed to oversee the environment, and anti-vaxxers being put in positions to determine the safety and implementation of vaccine regiments it can be overwhelming in trying to decide which problem to address first.
Meanwhile different factions are calling for the Cheeto-in-chief’s detractors to tone down their opposition in the interest of cooperation.
I’m scared, and I’m not the only one. Even as I do my best to draw attention to the terrifying rhetoric and the distressing similarities between the events leading up to the holocaust and the current events, I hope that I’m wrong. I spend much of my time wishing for me to turn out wrong. But even as I desperately hold on to the idea that maybe it won’t be as bad as we fear, there is one area in which I am already being proven right.
The next four years are already showing themselves to be potentially fatal for one specific vulnerable population: the disabled.
We know you want to help and be helpful. You don’t have to stop being helpful, but please ask first. Always ask first. Then help. If your help is wanted then help. If it is not, do not get angry at the person who refused the help. Why would you do that anyway? Secondly, go use that helping spirit and help someone else if you can.
When you encounter a disabled person and you want to help them. You need to always ask permission first. Especially when is comes to assistive devices. Assistive devices are a part of the person who uses them and you need to ask permission before moving them. You wouldn’t go up to an able bodied person and just grab them and start pushing them around. (Or if you would, uhm please don’t do that. That is not okay) This goes for someone in a wheelchair, a walker, ect. DO NOT just grab them and push them, ever. You have to ask permission first.
Consent is kind of really important. Especially when you are a stranger and you don’t know what a disabled person is dealing with. You could make things a whole lot worse with your unsolicited “help”. Say someone is taking a break and just sitting because they are dizzy. You just moving them could be dangerous, someone could get worse off, maybe get physically ill, even pass out. You don’t know, and when you don’t know don’t assume.
Ask permission to help someone.
Also if someone has an assistive device nearby. DO NOT move it. What if they need it and suddenly it’s gone. I know I like to keep my cane nearby at all times. That is not always convenient for other people. Oh and it falls a lot and makes a loud ass noise. However if I need it I need to be able to reach it. Especially if there is some kind of emergency and I gotta go quickly. Like to the restroom. Again if it needs to be moved, ask first. Maybe if we are in a restaurant we will ask to be moved somewhere where it won’t be in the way. Or sure maybe it can get folded up and stored a bit out of the way. Either way.
Now opening doors for people. Usually a pretty nice thing to do. Please be mindful of this though, if I am far away and you are just holding the door open for me, and then get aggravated because I am not moving fast enough? Please don’t even bother. Your help is annoying at best. I see you, I remember you.
Now something specific to look for when it comes to doors. Opening doors especially if someone is leaning into them as I always do, because it makes it easier on me when I am using my cane or walker. When you open that door out from under me, I could and have fallen before, or even stumbled and hurt myself (and have before). This is not okay.
Service dogs are another big one.You do not touch or interact with a service dog unless you have permission. Period. If a service dog is wearing a vest, they are working. You should never go up and try to pet the dog or distract them in any way. This means they are not working and doing their job. Which can again hurt the disabled person. One exception to this is if the owner is unconscious or in trouble the dogs vest might have an information pocket. Then again calling for help is still probably your first and safest bet. As well as the paramedics or what have you are trained to deal with these things. Looking for medical bracelets as well stuff like that.
It just takes a simple ask “can I help you?”, “need help with the door?” or “need some help?”. Simple short phrases that can make you feel good for being so willing to help poor disabled me (or other people), and can help us in not getting hurt by your overbearing generosity. Yes your “help” can be harmful. So please ask permission first.
This is an excerpt from Young, Sick, and Invisible.
The world praised Mother Teresa for her service to humanity since well before her death. Yet we have now seen the publication of several books and studies showing that the praise she has received may have been unwarranted. Her organization raised millions, perhaps even billions, of dollars—certainly enough to build a state-of-the-art hospital that could have either cured, treated, or at least made comfortable the suffering to which she tended. Continue reading “Mother Teresa and the Ecstasy of Suffering”