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98lindsey · 1 month
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It’s also important to remember that someone who is disabled that didn’t do everything right is allowed to receive help and exist. It’s ok to do things wrong and be disabled as well.
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98lindsey · 3 months
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Me sitting here wondering what this squeaking sound is only to realize it’s me wheezing. 🤦‍♀️
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98lindsey · 6 months
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People in charge of accommodations seem to be under the impression that they can only provide a set list of accommodations. If it hasn’t been done before they act like it’s impossible. But the truth is every accommodation was new at first. Yet disabled people still get thrown under the bus every time we try to TELL these people EXACTLY what we need.
who else is sick of facing ableism in the process of getting accommodations!!
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98lindsey · 7 months
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I was diagnosed with pots when people still thought it meant I was smoking too much weed. I had to intricately explain the disorder to every doctor and nurse I encountered. I spent years looking for treatments and reasons behind why I was sick. I found nothing. Now, everyone knows what it is.
Don’t get me wrong, I’m glad it’s more known and diagnosis is easier for people now. But I’m also really jealous that people are understood so easily. I wish it could have been like that for me.
I’m also having to end my journey to get a service dog because I’m now too sick to take care of one. But in the beginning the idea of a pots alert dog was very unknown and super rare. Now I see a pots alert dog every time I go on Facebook or TikTok. 7 years later I have no service dog and I’m now diagnosed with some other disorder people don’t know about.
I see people living their lives with pots and I’m so jealous because when I was diagnosed I was forced to end my life as I knew it and change my path. There were no accommodations or understanding people that could help me. So many people thought I was faking or exaggerating and wouldn’t take me seriously. I’m glad it’s better for other people but I still wish it would have been easier for me.
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98lindsey · 7 months
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This so so relatable.
I chose my my college before I became disabled, but if I had the chance to choose it over again with accessibility in mind, I would have chosen a different campus. And that’s only based on the ground being flat, because past that, there’s not much change in between campuses. They are 100% built for healthy (may I even go as far to say athletic?) young adults.
It doesn’t matter how many accommodations they add after the fact. If a building wasn’t built to be intentionally accessible than it is very hard to change it afterwards.
However bad you think accessibility on college campuses is, it's worse.
Looked around today and basically wanted to give up just trying to figure out where to enter this one building and how the hell I am supposed to even park close when there are only special lots.
It makes me want to give up just because of that. I shouldn't have to panic about just getting to and from my classes.
We deserve better.
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98lindsey · 7 months
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What people don't understand about "no excess physical activity/exercise" is that everything is physical activity.
I told the people at orthopedic urgent care that I can't do physical therapy because my condition doesn't allow for exercise. They gave me a list of things I could do at home. They were exercises. I was frustrated at first, but it made me realize how able bodied people can't conceptualize "no exercise" at all.
Walking down two hallways to get to my college class is exercise. Cooking and baking are exercise. Getting something from downstairs is exercise. Even typing is exercise. Each one of those things chips away at my ability to do simple things, like sit upright or speak or even just stay awake. When someone says they can't exercise for medical reasons, that means they can't, and pushing them to do physical activity because it "doesn't take that much energy" is dangerous. Everything takes energy.
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98lindsey · 7 months
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Not me being accused of “feeling better” when I answer the phone with a happy tone.
A phrase that bothers me, as a chronically ill person, is "You must be feeling better."
First of all, this is patronizing. This is a phrase smug adults say to a child who they think is malingering. It is not what you say to your adult friend with an intractable forever-illness.
Second, there is no "better." I'm feeling somewhat bad all the time, and that's ok, but I don't think of this in terms of "better" and "worse." Are you, an able person, thinking of your daily existence as "better" and "worse"? How would you feel if you told someone about a particularly above-average day, and they responded by saying "Oh, so things must be going better"?
I'm not good at walking. I haven't been in remission in two years. If I have a day where I can make my own meals, that doesn't mean I am "better." It means I am having a good day, which is ephemeral, but this is ok. I don't think that tomorrow will be "worse," even I can't do as many things as today. I think tomorrow will be tomorrow.
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98lindsey · 7 months
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Sometimes I think about how my sister leaves when I’m in bed and comes home when I’m in bed. Then she makes me dinner and even will bring it to me if I’m feeling bad. I feel like I look so lazy and unproductive and like I’m not trying to succeed. But then I realize that me succeeding is me not triggering symptoms, which requires laying in bed. It’s not a normal life but it’s what I have to do to survive.
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ID: Text reads "So if you're just in pain all the time what do u do at home all day?" Me: image with four panels. first panel is a small cat tucked into bed. Second image is Kermit wrapped in a blanket. Third is Kermit lying on the ground on fire. last image is a large cat laying on something resembling a pillow. By @iluvmyheatingpad End ID
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98lindsey · 7 months
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There are so many people who are disabled or chronically ill who don’t have people who will care for them or about them. And then there are those with family who claim to care but only seem to take action on the surface. I begged for so many years with tears and sobs for my person to hold me and take care of me without me begging. But it never worked because they weren’t capable. I can’t tell you how many times I blamed myself for not being good enough to care about. Now I live by myself and while I struggle everyday with life, I don’t deal with the emotional baggage of trying to force someone to show their love for me. Maybe I’ll find a person one day who loves me like this, but if not, I’ll keep on going with trying to love myself.
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98lindsey · 8 months
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Friendly reminder that chronic and invisible illnesses are not magically cured by exercise, changing your diet, “clean living” or suddenly becoming vegetarian or vegan.
Believe it or not, but most disabled people cannot afford to overhaul their diet and swap to completely organic, vegan foods. Some disabled people are in too much pain or too exhausted to exercise. What may work for you may not work for others.
Chronic illnesses are lifelong. And in many cases, terminal. They cannot be cured, they can only be suppressed. So don’t berate and dictate to disabled and chronically ill people about how they should go about "curing" themselves.
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98lindsey · 8 months
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Horrors of Accessibility at College #1
Getting around campus:
Having no place to sit while waiting for the bus or the actual disability van that drives people around campus. Most days I sat on the ground waiting because it was the only option I had.
No clear signage on where to wait for the disability van.
The disability van only dropping people off a certain spread out (unmarked) points on campus. Instead of, you know, actually taking that person to the building they need to go to.
Refusing to drop students off at a more accessible entrance to a building because it wasn’t at one of the (unmarked) stopping points.
Drivers being told they are not allowed to help student get into or out of the disability van.
Having to call for any change in schedule. No better way of communication with the disability transportation services. Also caused me to wait more than 30 minutes sometimes when I thought the van was running late but it actually went to the wrong location or showed up at the wrong time. They never called me to see where I was, just decided to forget about me.
The disability transportation services NOT RUNNING ON THE WEEKENDS. At all. Ever. How can they just not provide transportation for the disabled on certain days. Disabled individuals don’t stop existing on the weekends.
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98lindsey · 8 months
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Fat and Disabled are allowed to exist together and separately.
My fatness doesn’t cause my disability and my disability doesn’t cause my fatness. My body should not have to be viewed as something wrong because I’m fat. My body shape is not something that needs to be fixed and it’s certainly not something that would fix my disability if it changed.
I’m not lazy for being fat and disabled. I’m not, not trying enough to get better if I choose not to pursue weight loss. I can eat whatever I want and don’t deserve to be judged for it. I am beautiful and gorgeous and loved exactly as I am and I don’t owe anyone the battle of trying to lose weight to prove that I’m worthy.
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98lindsey · 8 months
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When you become too much for the family that was always supposed to love and care for you… It’s too much for them, but what about me?
One of the worst things about being physically disabled is how often you get left behind.
You get left behind when with friends because we can’t walk fast enough or you can’t go somewhere because it’s not accessible.
You get left behind by our doctors who don’t care about our pain
You get left behind by activists who couldn’t care less about disabled people
You even get left behind by other disabled people
We even get left behind by people who say they love us, eventually they only see us a burden and a kill joy for things we can’t control
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98lindsey · 10 months
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There are times when I’ve been broken and battered. When no friends exist and family doesn’t seem to care. When the most interaction I get is a text reminding me to pay my phone bill. When I’m called “too happy” and “annoying” and “loud”. When I’m too much to care for or think about. When I curl into a ball because I don’t understand why nobody wants me.
So when you ask me for something, I will jump on the chance to do anything for you. I will meet your every need even at detriment to myself. I will be excited and happy to see your face come to my door. Maybe it’s projection of how I wish I would be treated. But maybe it’s also because I want to give you what was never given to me. So if you need a granola bar or a glass of water or a button sewn on your shirt, I will do it and more. For you.
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98lindsey · 1 year
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SimplySpoonie
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98lindsey · 1 year
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Having to know your condition inside and out and better than any doctor because it’s so vague in the medical world is exhausting. 😞
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98lindsey · 1 year
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Me: Why do I feel so sick today?
Also me: *realizing I ran out of meds in my weekly organizer this morning and didn’t refill it*
Anyone else accidentally not take their meds because they were too tired to refill the organizer but then get stuck in this cycle of feeling bad cause you didn’t take you’re meds 🤦‍♀️
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