madelinenerdfighter

[madelinenerdfighter]

Yup

And I just had yet another example of ableism / in this case would look like full-on disability bias from a neighbor two doors down. I was walking back to my apartment. I wasn't feeling well and many disabilities are invisible either part or all of the time. And this neighbor reaches me as I get to my door and they say how I look like I'm walking good. And he starts talking about my mobility scooter. And I say something to the effective yes like to use my mobility scooter means I get to keep my abilities. and then there's this whole thing he starts vomiting on me around people cheating the system. And Lenny goes on about people with mental illness who their doctors say aren't mentally ill and get taken off assistance and start screaming about it. And I'm like oh my God what the heck. And I was so in need of some water and I really needed to sit down which was part of the reason I was walking fast. It's hard to quickly react when somebody does that. And I haven't had it done in a while. But it was awful to have from a neighbor doors down who's live there for decades. And I had just been doing volunteer work for my building partly because emotionally I really needed it and partly because I needed something that wasn't fighting to stay alive. Something that a purpose, something I can accomplish because I can't even get a replacement air conditioner and the temperatures are going up to 30. So I'm kind of freaking out. So to have this kind of nonsense come at me is really hard. Or the love of all that's holy don't make people with visible or invisible disabilities situation worse by this kind of prejudice. You don't know what's happening in their life. You don't know their medical conditions. And they don't owe you that information

I tend to mask my systems. And yes I tend to push myself which is never a good idea and it's part of why I have the mobility scooter so I don't do that. Other people have done better posts about mobility aids And how most people or many people use them and just because you see somebody stand up or walk is a mean they're cheating or anything. They're following medical instruction. Their device allows them to keep their abilities longer or not end up pushing themselves outside their limits and as is stated above temporarily or permanently worsening their condition

Tbh I think calling the act of pushing yourself to your absolute limits and severely flaring up for days on end just to be perceived as “normal” or “capable” by yourself or others only to do it again and again knowing it will hurt and do incredible damage if not IRREPARABLE damage just so you can try to prove something that can’t be proven because you live with disabilities and symptoms that you refuse to acknowledge as simply “overdoing it” takes away that it’s truly just self harm imo

Like you’re just hurting yourself. That’s self harm.

[madelinenerdfighter]

@rhiamaykes read your tags, lol. I'm long viral Epstein-Barr myalgic encephalomyelitis onset decades ago. I think the biggest problem when people say they have a cure for a long viral disease is that they're not taking into account that there are always going to be families of disease in long viral comorbidities and definitely within myalgic encephalomyelitis. And the problem with that is that that means when a solution comes up for a family of the disease and it doesn't apply to everyone with that disease they're tending to throw it away. It's the whole baby out with the bath water without even understanding there's a baby in there aka a family of the disease.

In here in Canada it's even worse cuz we don't even have a category of coverage in any province and the feds abdicate the specifics of health care to the provinces. They give the money to the provincial ministries of Health but no oversight. So we don't begin to get stats without a category of coverage and it's the feds who put money into research for ME. So this lack of scientific understanding of the family of disease factor for long viral up myalgic encephalomyelitis is a big hairy one

Le sigh

THEY MIGHT HAVE FIGURED OUT WHATS CAUSING LONG COVID?!?!???

[madelinenerdfighter]

THEY MIGHT HAVE FIGURED OUT WHATS CAUSING LONG COVID?!?!???

[madelinenerdfighter]

It's almost like something happened in 2020-now that is causing these problems.

[madelinenerdfighter]

Some people hate universal healthcare, in which everyone pays and everyone has healthcare.

They prefer private healthcare, in which everyone pays for rich people's profit and everyone may or may not have healthcare depending on whether it's profitable to deny their claim.

If you're one of those people and you end up stuck in a "tyrannical" society that has universal healthcare, there's a solution. Just set aside the money you'd contribute to rich people's profits, and give it to your favorite rich person. And to simulate your coverage being denied, just roll a dice like you're playing Dungeons And Dragons. If you roll a 1, you accept all the care that's provided to you. If you roll a 2, you refuse the care as if it was denied and you die. If you roll a 3, you accept only a small amount of the care that's provided. If you roll a 4, you accept a different small amount of the care.

And you can still do that even if universal healthcare becomes reality. Your fantasy of paying for rich people's profits and having to gamble on whether you'd have coverage can still happen.

Of course, there's another explanation. Maybe you just enjoy watching others suffer. You want people to die from not being able to afford healthcare or from having their claim denied, so you can feel superior to them.

[madelinenerdfighter]

[madelinenerdfighter]

[madelinenerdfighter]

The management at my building(The branch of the government In a building for low income seniors in prisons with disability, which makes it all so much worse) apparently didn't understand that you needed to clean kitchen and bathroom fans and the attached ductwork yearly. Neither did I until the downstairs apartment started venting into mine August 2024. 9 months later and counting, after having to take them to the residential tenancy board, they're finally cleaning the building and look at what just two bathroom fans on my floor look like.

Yeah, lint catches fire. Make sure your landlords are also doing their jobs

Domestic incompetence is going to kill men

[madelinenerdfighter]

if you ever find yourself thinking “wow I scraped the bottom of the barrel with my energy with that and came out okay!” that’s the devil talking. you did not come out okay. you borrowed energy from the future. you will repay it if you don’t rest and replenish the borrowed energy first.

[madelinenerdfighter]

[madelinenerdfighter]

[madelinenerdfighter]

[madelinenerdfighter]

what abled ppl think is a massive problem for disabled folks: 13 year old on the internet faking something

what is actually a massive problem for disabled folks: "well you don't LOOK disabled, are you sure you're not faking? I'm not giving you accommodations until you PROVE you're not faking. Please give me, a stranger, your medical info and explain your condition to me in detail so I know you're not faking and only then will I respect or take you seriously"

[madelinenerdfighter]

[madelinenerdfighter]

I found an extremely dope disability survival guide for those who are homebound, bedbound, in need of disability accommodations, or would otherwise like resources for how to manage your life as a disabled person. (Link is safe)

It has some great articles and resources and while written by people with ME/CFS, it keeps all disabilities in mind. A lot of it is specific to the USA but even if you're from somewhere else, there are many guides that can still help you. Some really good ones are:

How to live a great disabled life- A guide full of resources to make your life easier and probably the best place to start (including links to some of the below resources). Everything from applying for good quality affordable housing to getting free transportation, affordable medication, how to get enough food stamps, how to get a free phone that doesn't suck, how to find housemates and caregivers, how to be homebound, support groups and Facebook pages (including for specific illnesses), how to help with social change from home, and so many more.

Turning a "no" into a "yes"- A guide on what to say when denied for disability aid/accommodations of many types, particularly over the phone. "Never take no for an answer over the phone. If you have not been turned down in writing, you have not been turned down. Period."

How to be poor in America- A very expansive and helpful guide including things from a directory to find your nearest food bank to resources for getting free home modifications, how to get cheap or free eye and dental care, extremely cheap internet, and financial assistance with vet bills

How to be homebound- This is pretty helpful even if you're not homebound. It includes guides on how to save spoons, getting free and low cost transportation, disability resources in your area, home meals, how to have fun/keep busy while in bed, and a severe bedbound activity master list which includes a link to an audio version of the list on Soundcloud

Master List of Disability Accommodation Letters For Housing- Guides on how to request accommodations and housing as well as your rights, laws, and prewritten sample letters to help you get whatever you need. Includes information on how to request additional bedrooms, stop evictions, request meetings via phone, mail, and email if you can't in person, what you can do if a request is denied, and many other helpful guides

Special Laws to Help Domestic Violence Survivors (Vouchers & Low Income Housing)- Protections, laws, and housing rights for survivors of DV (any gender), and how to get support and protection under the VAWA laws to help you and/or loved ones receive housing and assistance

Dealing With Debt & Disability- Information to assist with debt including student loans, medical debt, how to deal with debt collectors as well as an article with a step by step guide that helped the author cut her overwhelming medical bills by 80%!

There are so many more articles, guides, and tools here that have helped a lot of people. And there are a lot of rights, resources, and protections that people don't know they have and guides that can help you manage your life as a disabled person regardless of income, energy levels, and other factors.

Please boost!

[madelinenerdfighter]

money is such an underrated accessibility option.

like people want to think any disabled person who is after money is morally suspect some way, because they're not asking for "treatments" or "accommodations" like a lot of our issues can be fixed way more easily with money. can't drive? paying for a taxi is often one of the more accessible alternatives. can't cook? you can pay more to have prepared food delivered to you. food restrictions? that food straight up costs more money. can't clean? you can pay for someone to do that. house inaccessible? having (lots) of money can help with that, you get the gist.

having money won't make us abled. it also won't stop our symptoms from being distressing, painful, or debilitating. but there's a huge gap in experience between the average poor disabled person and someone who's actually wealthy. you can buy your way out of some of the difficult situations most disabled people are left to rot in. wanting money, needing money, asking for money is pretty natural when it's such a useful tool. why get so weird about disabled people wanting money like i'm pretty sure everyone wants money anyway