studying-without-spoons

[studying-without-spoons]

We’re indoctrinated from childhood with the idea that staying home sick is somehow suspect or lazy, and that morally superior people never have their productivity schedule compromised lol, when the reality is that going out in public when you’re sick is a terrible thing to do to immune-compromised and chronically ill people (and “healthy” people) and staying home is a good thing and a right we should all have, not only for our own sakes but for others’

[studying-without-spoons]

Confession #5,535

I’m always afraid I’m over sharing in my disability lit class, but it’s because nobody else has explicitly identified as disabled. Nobody in my class uses mobility aids, and a lot of people seem to assume that everyone in class is abled. So screw it, I’ll use myself as a case study and go off about the treatment of invisible disability if I dang well please.

[studying-without-spoons]

Confession #5,537

I feel like I am using my chronic illness as an excuse to for doing bad at school but it really is hard for me. I’m working to get accommodations for the first time and I think they will really help me but my friends and family just think that it’s cause I don’t want to do the work all the time. Why do I feel guilty for trying to get accommodations? I know I fit the requirements for them and I’m not just doing it for the sake of fucking around.

[studying-without-spoons]

Confession #5,499

This disease eats so much life ..

[studying-without-spoons]

Confession #5,503

Does anyone else find they do better when other people aren’t around? When I’m on my own I make better decisions with food, I get more stuff done and I’m not stressed. As soon as people are home that all changes. I’m also not as hard on myself when I’m alone; if I don’t have the energy to do something it’s fine. But if other people are they I’m constantly stressed I’m not doing enough…

[studying-without-spoons]

All reasons to use a cane are valid!!!

Highlights from my personal experience:

To make an invisible disability visible

To help with chronic fatigue

To help with chronic pain

To help with joint weakness

To bash ableists upside the head

To help with chronic dizziness

[studying-without-spoons]

no shame even in shame. no shame in asking for money. no shame in using mobility aids. no shame in internalized ableism. no shame in getting our needs met however we can make that happen.

no shame in anger or bitterness or joy. no shame in recovery, nor in incurability, nor in terminal. no shame in changing states, no shame in the growing pains and shrinking pains. no shame in feeling. anything.

only recognizing and letting go or holding on or just existing within without with. only feeling and learning and regressing and being.

[studying-without-spoons]

if you accuse a disabled person of “not taking their health seriously” because they’re not falling into the good cripple archetype, please fuck off!!!!!

[studying-without-spoons]

Am I Using My Disabilities As A Reason Or As An Excuse? A biography by me, featuring interviews with my internalised ableism.

[studying-without-spoons]

I cant believe this is controversial, but disabled people are more important than cutting single use plastic. Bring back straws, don't ban inhalers and let us continue using the products that help us stay alive and healthy.

[studying-without-spoons]

[studying-without-spoons]

TIL astronaut Jack Schmidt discovered he was allergic to moon dust, which is a thing millions of other people have probably gone their whole lives never knowing.

[studying-without-spoons]

Chronically ill young adult problems #7

Dating when you’re young and sick is hard. When and how do you disclose your illness to the person you’re seeing? How do you help them understand your symptoms, especially if they’ve been mostly healthy their whole life? How do you plan fun, interesting dates when there’s so many things that you can’t do and so many inaccessible public places? Even if you do everything right, you’re afraid that people your age, who are mostly concerned with experiencing the world and having fun, won’t be able to understand the limitations your illness places on you and won’t want to date you.

[studying-without-spoons]

I think that one of the biggest problems with ableism in America is the sinister “good samaritan” disguise it takes.

So much of the ableism we can observe comes from “good intentions”:

- trying to spot “fake” service dogs

- leaving passive aggressive notes on cars that people think shouldn’t be parked in disabled parking spots

- the entire mess that is the assisted suicide movement

- posting “inspirational” photos, videos, and stories about disabled people without their express permission

- using terms like “special needs” and “differently abled”

- trying to cure conditions that are not inherently harmful/fatal like autism or adhd

- overriding the autonomy of disabled people

The arguments I see for these always come from people who refuse to believe they are perpetuating ableism. They insist that they are trying to help disabled people and that these things are “for their own good”.

But they just perpetuate stereotypes and existing power structures already stacked against us.

Listen to disabled people on disabled issues first and foremost. Neurotypical and able-bodied people cannot be seen as the authority on a community they are not apart of.

[studying-without-spoons]

imagine someone without allergies injecting themselves with an epipen and saying “I find that this did not help me therefor epipens are not helpful to people with allergies”

this is basically the argument neurotypicals are making when they say fidgets don’t actually help neurodivergent people or people with mental illness bc theyre “distracting” or “don’t relieve stress” or whatever they’re argument may be.

[studying-without-spoons]

It’s so stupid that people with chronic pain have to basically ration their pain meds because they can’t afford more or their doctors won’t prescribe more. It’s awful that you can be laid there with debilitating pain and still be wondering whether it’s really worth taking your pain meds, because you never know, you might be in more pain later.

Like, I can still sit up for 10 minutes before my neck hurts too much from my skull sinking down into my spine so do I really need to take my pain meds right now? I only have 6 dislocations that I know about so is it really bad enough? I feel like I’m being stabbed in the spine but like, this just happens sometimes and I’m not quite on the verge of passing out yet so I can probably wait a few hours and see if maybe it goes away on it’s own?

And then, after all that, people still tell you you’re too reliant on painkillers. People still say you just need to try harder to push through the pain. Like what the fuck do you think I’m doing? I’m not disabled just for shits and giggles.

[studying-without-spoons]

I think what non-spoonies tend to forget is that chronically ill people do not just get ill more often than other people, but are ill all the time. When we miss school or cancel appointments, it is not because we ‘felt a bit peaky again’ and decided to not go - we feel bad most of the time, but still do things anyway. A lot of us feel ill, in pain etc. all the time, and we cancel plans/take time off when we physically or emotionally cannot cope with the day or the things required of us. Our ‘good’ or ‘okay’ is a healthy person’s ‘awful’. We are consistently making more effort than ‘normal people’ in order to live and make a living, and we often make that effort at the expense of our health. And it is so hurtful and offensive when people we know/ friends/ family/ teachers etc. get frustrated and annoyed because they think we are not trying hard enough. We are always trying. We are always fighting. Sometimes it’s too much.