disabled-planet

[disabled-planet]

And asking for one’s trauma and symptoms is a preach of privacy too.

Not sure if anyone who needs to hear this will see this but

You are not some kind of hero to disabled people for “weeding out fakers” (fakeclaiming)

You cannot tell someone is faking from their post all you are doing is spreading false information and probably harassing actually disabled people because again you cannot tell

[disabled-planet]

shoutout to disabled people who don’t have a diagnosis.

shoutout to disabled people who don’t seem to fit any one disorder and so they’re continually dismissed by doctors.

shoutout to disabled people who feel like they’re faking, who have some level of control over their symptoms, who don’t know if it’s real or not.

shoutout to disabled people who are in pain and don’t know why.

shoutout to disabled people who can’t tell if they’re in pain.

shoutout to disabled people who feel like a mystery.

[disabled-planet]

THIS

Kinda peeved about the specific people in the autism community that try to claim all autistic people wouldn't be disabled if society changed to fit us but no, I, for one, absolutely would be disabled. My autism causes me to lack interoception which is the sense that allows you to know if you need to eat or drink water or go to the bathroom or get sleep. I have to set alarms to remind me to eat because, if I don't, I won't know I'm hungry until I'm knee deep in a migraine. I also have a neurogenic bladder and me not knowing when I need to pee until the last possible second can easily trigger my bladder into failing and I'd have to get a catheter inserted so I don't get kidney failure. I have to write down how many bottles of water I drink in a day to see if I drank enough water because, if I don't, I'll get a migraine.

Then there's also sensory issues. Sure, we can make society be a little less bright and loud but you can't escape thunderstorms or people screaming because they're in pain. We can't force dogs to stop barking or babies to stop crying. Society changing won't fix that.

Then there's autistic people who need full-time care. Some have intellectual disabilities. Some people can't communicate on their own even with digital AAC devices or sign language and need caregivers to be their voice. They're definitely disabled. Society changing won't mean they won't need full-time care. And that doesn't mean people shouldn't try to change things for the better. If we create good change, we could absolutely reach a point where high support needs autistic people can have access to the best possible kind of care.

A lot of this sentiment I believe comes from internal ableism like people have to blame anything except for the fact that disability is a natural part of life. And I'm not trying to force people into calling themselves disabled either. That defeats the whole purpose of this post. But I'd like people with low support needs to stop speaking for everyone in the autistic community. Disabled isn't a bad word. It's just part of life.

[disabled-planet]

(OP I am agreeing with you!)

I feel like you don’t even need a diagnosis for one. Because…. Well, haha, I’m jorkin it, and by it, let’s just say my fatigue and pain can make walking a horror show.

posted to a chat this morning but now i am releasing it to the hellsite

you do not have to have a specific diagnosis to use an aid that manages your pain and this is the hill i will die on forever

[disabled-planet]

“I need my medication gluten-free please,” says the gluten-free guy.

“Urm, I guess this is gluten-free? Oh well have it anyway,” says the ignorant pharmacy.

"i need my medication please!" says the sicks guy.

"fuck you" says the fuck you pharmacy

[disabled-planet]

I wish there were people with unknown/undiagnosed conditions, with celiac, or other uncommonly seen conditions posting. I can’t help but feel sort of isolated and lonely.

So people with celiac and/or a photosensitive condition, I see you. You aren’t alone. People with an unknown condition, I see you too.

[disabled-planet]

Gluten sucks gluten sucks gluten sucks gluten sucks I am in pain I am in pain I am in pain

Why is my body like this

[disabled-planet]

Alright, I know I shouldn’t be this upset.

But I couldn’t obtain an official celiac diagnosis. Why? Because why would I inflict irreversible harm to myself for over a month to half a year for the endoscopy test.

For those who don’t know, I experience brain fog, increased anxiety, mood swings, worse insomnia, absolutely agonizing GI pain, and other gross things.

Mind you, a blood test came back positive for a gene of Celiac. Family members have celiac and/or gluten-intolerances. I have a wide range of symptoms.

I eat a very strict gluten-free diet and I feel so, so much better.

Okay, so if you were in my shoes, would you go through the test? Would you be in total pain and suffering?

This is why I HAD to self-diagnose. I am NOT going to risk my health for a label. It’s just a label because I already go on a strict gluten-free diet. Nothing would change. I have the gene, I have symptoms, I had wonky blood tests. I am NOT getting the endoscopy and I am NOT harming my body.

I also cannot afford to shop around doctors, nor do I have the time currently. Plus, doctors still aren’t fully educated about celiac, even gastrologists. Mine googled Celiac right in front of me.

Yes I have done countless research and thought it over for YEARS. Not by a tiktok video.

For those who are anti-self diagnosis- would you like me to suffer? If I’m “taking away resources”, want me to be back on gluten and suffer?

I just don’t understand being anti-self diagnosis when people self diagnosis as it’s like a last grasp of answers in a healthcare system thats full of ignorance, sexism, classism, racism, transphobia, etc. Doctors do not know everything, they are human. Not bashing on doctors but it’s important to realize they have faults. Due to their faults, people are misdiagnosed, get hurt, and/or left without answers.

Please do NOT interact if you are anti self-diagnosis.

[disabled-planet]

Gotta love it when people do not realize that a diagnosis requires money, and by some a good amount of money.

Perhaps some cannot obtain a diagnosis due to discrimination by either their gender, sex, race, etc.

Or perhaps it’s because the symptoms are obvious, there are clear clues to what it is, but for some reasons, the doctors ignore it and say it’s merely anxiety.

Please stop thinking self-diagnosis is ableist. At times, the only thing someone can do. What? Do you want someone to suffer completely? It is not ableist. Yes only a doctor can diagnose you but what if this doctor is racist? What if the doctor is sexist? What if you cannot afford more than one visit to the doctor a year? What if you have horrible insurance? By your standards of being against self-diagnosis, it leaves people completely in the dark to suffer in agony. That is NOT okay.

If you have the resources and privilege to obtain a diagnosis, how about you also help go-fundme’s and donate to disabled people who are struggling financially.

By the way, not everyone goes to a tiktok video and immediately self-diagnoses themselves. Like myself, I did countless research, tried talking to many doctors, did some tests… but to no avail. It’s obvious I have this one condition, so painfully obvious but my doctors shrug it off. Seeing people claim that people who self-diagnose just watch a video and go hippity hoppity is so far from the truth. Also, I can’t afford much doctor visits and I am lucky enough to have decent insurance.

Though I acknowledge that some do not have health insurance or have terrible coverage. How on earth can they see a doctor then huh?

Being anti-self diagnosis is truly classist because it’s ignoring the horrible healthcare system (least in the US) and forgetting that many cannot afford doctor visits or tests.

Being anti-self diagnosis in my opinion, is ableist and definitely classist. Especially in the US, it can be sexist and racist too.

[disabled-planet]

No one:

Absolutely nobody:

Some people’s immune system: how about I just attacked my own organs and cells lmao

Us: wait what-

[disabled-planet]

As someone with chronic fatigue and experience flares that slow me down…

I literally cannot help myself to walking faster, even by a bit could be dangerous. I am in so much pain and at times so fatigued that I have the urge to faint.

Also if there is room, say “excuse me” and pass. You don’t have to be behind me.

people who hate slow walkers are ableist

[disabled-planet]

Having low processing speeds and poor working memory really sucks. Its got to be with my autism.

I really want to recall things and have others know that I’m paying attention but I swear I also have ADD or ADHD on top of this. Yes my mind has calmed a bit after gluten but it’s still chaotic.

I can’t recall people’s birthdays, what just happened, instructions or numbers that were quickly thrown at me. In a fast pace environment, it all makes me overstimulated.

For people who say “autism is a superpower”, you’re wrong. You think forgetting important information and instructions thud making people seriously mad is a superpower?

I don’t mean to frustrate or make people upset, I just can’t mentally function well if someone throws information at me, rapidly ,without detailed steps.

[disabled-planet]

If you're looking for ways to support folks affected by fires in the Los Angeles area, I have a list of good organizations as well as master lists of GoFundMes and other fundraisers in the latest edition of my newsletter.

I'll put some links below as well. Please note that I am not connected to these organizations or those collecting & collating GoFundMe fundraisers. Please see the individual lists for how to add your information if needed.

Donate to individuals:

Donate to help Black families who have been displaced

Donate to help Latino families who have been displaced

Donate to the National Alliance for Filipino Concerns’ Bayanihan Disaster Relief and Rehabilitation Program

Help disabled people displaced directly

Here’s a larger list of people impacted as well

Donate to organizations:

Disability Disaster Access & Resources works to help disabled and older folks prepare for and recover from disasters — you can find more information on how to donate to these efforts through the California Foundation for Independent Living Centers

Altadena Girls Fire Recovery is focused on helping young girls regain their sense of self and normalcy in the face of the Eaton fire

Pasadena Community Foundation has set up an Eaton Canyon Fire Relief & Recovery Fund

Pasadena Humane Society needs help caring for pets and wildlife harmed by the fires, including fostering and trying to save animals who were left behind in homes at risk

Los Angeles Guinea Pig Rescue has been taking in guinea pigs who have lost their homes or who have sustained injuries from the fires

Altadena Heritage focuses on keeping the unincorporated community safe from gentrification and mansionization — something that’s more at risk when rebuilding starts than it ever has been

California Community Foundation has a Wildfire Recovery Fund focused on the Los Angeles area

This Tiltify campaign is donating to the Los Angeles Fire Department (whose budget was majorly cut recently affecting the response they can give), the California Fire Foundation, the World Central Kitchen, Baby2Baby, and the Community Organization Relief Effort (CORE)

Note: receiving GoFundMe and other fundraising moneys can potentially impact how much FEMA will support folks. If you need to fundraise, here’s more on that.

If you live in the area, you can learn more about how to get involved to help through the Mutual Aid LA Network or LA Fire Mutual Aid Resources (which also has info on where there are free meals, shelter, wifi, and charging for those in need).

If you are disabled and impacted by wildfires and need help — or know someone who is in this position — you/they can call or text the Disability and Disaster Hotline at 800-626-4959 or email them at hotline@disasterstrategies.org. You can also seek help from the Independent Living Centers in your area, whose contact information you can find here.

If you want to help the incarcerated firefighters, you can do so by donating to the Anti-Recidivism Coalition and putting “firefighter fund” in the notes section.

You can also help LAFD firefighters by donating to the Los Angeles Fire Department Foundation.

[disabled-planet]

Man, I think I may be having a flare up again.

I don’t get it, I covered my skin aside from my face, neck, and face.

Am I that sensitive to UV light?

I think I will cry right now.

[disabled-planet]

Being anti-self diagnosis = being classist and perhaps other things as well. (Such as sexism and racism).

There I said it.

You cannot change my mind.

[disabled-planet]

what's your experience with online disability spaces like tumblr or discord servers?

Hi anon! Thanks for your question /gen

With discord servers - it depends, most of them from what I’ve seen listed on DISBOARD are anti-self diagnosis. However, some of them who do support self-diagnosis are really helpful to questions and learning. So far I’ve had good experiences. I’d just be cautious with any discord server these days ngl, learn how the moderation team works.

For Tumblr, I haven’t had much experience lately and kind of just started to use it frequently. There seems to be really kind people but also awful, self-centered people.

Please stay away from the Instagram disability community. It’s filled with unnecessary drama, people who misuse their advocacy to downplay others. There are a few good advocates out there but some of the drama is just… too much.

[disabled-planet]

⏰☕✏

⏰ - technically I do not have an offical diagnosis but I am sort of diagnosed? I got diagnosed with autism around 4th grade by the school’s pyscharatrist and the whole tests they provided at the school.

☕️ - I used to drink a good amount of coffee but after taking too much by accident once and how my anxiety is, I took a hiatus on caffeine. Now I am back to caffiene but only a cup of tea in the morning.

✏️ - I really liked school for the most part, least I enjoy college more than high-school in some areas with flexibility. However, I know that k-12 schools in America are seriously flawed, which I still don’t like. Plus, my health issues now are making college more stressful but I still love learning.

Thank you anon for asking!