CurseAvoider

now I'm hungry and it's not even close to lunch time 😩

still answering questions if you have any!

Oh one thing I can add, look up the reviews for your local disability office on google. They have different names depending, but the place disabled people get their claims assessed. Mine is full of people saying they left crying, from the doctors they had to see there. It's easy to gather facts from this.

That's a very good question, and I'm not sure I can answer it by myself. I think this is a space that is ripe for agitation, because disabled people are discriminated against in many ways. For one, states spend more money on auditing claims than on paying them out, which means if we gave everyone full pension no questions asked we'd actually be saving money. Where I live, wheelchair accessibility is absolutely not adequate. You literally can't access public transport in my town because there's stairs. Even parents with strollers have trouble with it. It's been like this for decades.

Most people are understanding to the needs of disabled people too, at least nominally, so part of the work is already done to get the public on board with disability reforms. They don't like "freeloaders" but they like feeling good about disabled people getting some of the accommodations we need - even if they're shitty accommodations that we don't need. But this is where a communist party can come in, and make sure we actually get what we need and ask for, not some half-assed project some politician can pat themselves on the back for because it's getting close to election time. I would even wager to say a lot of our needs has overlap with the abled population, such as access to public transit, healthcare, and welfare. This benefits everyone, not just the disabled.

People think you're born with a disability but this is not always true. I don't know the stats, but my disability started after an unprovoked pulmonary embolism at 30 years old. You can get into a car accident and become disabled. It can happen at any age for any reason.

Having sections about equality between people (usually between genders in my context) and healthcare reform in a party program is not enough - yet this is the best my previous party can offer. We need particular accommodations. A lot of these things have come about under capitalism, which is a missed opportunity for communists to agitate around! I can now get my life-saving medication delivered with just two phone calls - one to my dr to get a refillable prescription, and one to the nearby pharmacy for free delivery. There is even an app now that allows me to click a button to get my medication, after a scheduled call with one of their doctors. I haven't tried it yet but I think I'm going to do that next, because on bad days I literally can't dress up and go outside, and you never know when you have a bad day (and for how long), so I could actually run out of medication without any way to get more by myself if there was no delivery. Even making phone calls on some days is impossible.

On that I would also add, technology sovereignty is a big point that parties need to look at too. It ties in with disability but it's not particular to disability. This app is owned by huge health companies and insurers, not doctors or the public. I'm pretty sure they sell your data and even if they don't, the particular insurers, that you may not be a customer with, now have access to your medical data.

The party I used to organize with for example has a section about digital tech in its program, but it's actually anti-disabled. They want to limit digital tech in classrooms (kids can be disabled too, but they make no mention of special cases and explicitly say they want to limit it as much as possible). They also want to limit digital 'overconsumption' for ecological reasons. what does that even mean you know? I literally need these tools to help me go about my day (e.g. being able to fill in forms online. I need someone to send my monthly claim form by mail because the most I can do is put the paper in the envelope, I can't take it outside on most days). This is something a disabled person could have advised them on, which probably did not happen when they wrote this program.

So to me it would make sense for parties to include an actual, serious section about disability rights and issues in their programs. This requires disabled people to be represented in the party, of course, and:

allowed their accommodations so they can speak and participate equally,
to actually be listened to.

Where it gets challenging is we are often unable to show up in person and can't provide as much effort to the party, of course. It's very individualized because for example, personally I can write for hours. My mental energy is not exhausted by my disability. But I can't go very far outside, or drive myself very far. Other disabled people may be able to go out, just needing more time to get there. And other disabled people may simply get exhausted from any mental effort and can only provide 30 minutes of effort at a time. It's very dependent, and I think this is why it's important to have large disabled representation in a party.

lol it was generated automatically by an online generator, and I liked the irony.

No problem, thank you for asking.

The recommendations given in training courses is to always speak to the person directly and not assume things about them. A lot of disabilities are also invisible (most of them I would say), meaning someone may look perfectly fine but still be disabled. Respect their autonomy, e.g. don't put your hands on a wheelchair without asking the person if you can help them first (and they say yes), also ask how you can help them exactly if you're not sure bc someone might be struggling going down stairs for example, you ask if you can help, they say yes, but maybe they only want you to carry their bag and manage the stairs themselves instead of being helped down. Though usually people are not dicks about accepting any kind of help lol. and don't treat them like children of course!

Oh that's a tough question lol. Probably the most realistic thing to expect from people is that there's no checklist of disabilities, they can look very different from one another. Some people's disability flares up in pain, but mine doesn't. Some people get tired to the point they can't even think anymore if it gets too much, but I don't either. I just get constant nausea 🫠

This does create comorbidities of sorts, obviously. I can't lift a lot of things as they might trigger it, but it's not due to lack of physical strength. I can't walk for too long because it might trigger an episode, but it's not that my legs don't carry me. That's the second thing people should know about I think, disabilities are ultimately specific to the person and it's best to ask what their triggers are instead of assuming what they can or can't do. For example if I'm close to an episode I hate physical touch, but my family doesn't get it and they might put their hands on my shoulders or something, which is even worse.

Absolutely, thank you for asking. Even one year in I'm still figuring out my good days from bad days and I often tell people who see my symptoms that I'm discovering them (the symptoms) the same time they (the people) are. It doesn't come with an instructions manual lol.

Sometimes I might be able to go out and run my errands without too many problems, and sometimes I won't be able to. But I won't know before I actually do it, so most of the time I try to avoid any known triggers and stay sedentary.

A good day is when I don't get too much nausea and especially not the "99%" nausea, the moment where basically any sensation whatsoever can cause me to throw up. These usually last several minutes and I have to stay perfectly still, not thinking, not moving, not talking, only being able to wait until it goes away.

In terms of sustainability it might be better today to forego grocery stores entirely and have deliveries assured by electric, commercial drones. The "store" itself (now a warehouse) could be supplied by rail directly, also electric.

Apparently in logistics the last kilometer of delivery is the most expensive, and stores still need to be supplied - usually by truck. This could also reduce traffic in the city-center, narrow european streets.

Delivery is assured by the postal service (I think they set up a specific branch for it) and costs like 3$. It can actually be free now on some days. It's just so much more convenient even for abled people especially because you know how much your cart costs before you pay, and it saves on gas. I've been doing it for years because I didn't have a drivers license for a long time but it's so convenient that I wouldn't go back anyways lol

Here the 'expertise' doctors apparently had to start recording appointments because there were too many denials of disabilities. It also takes a whole year from the time you submit your claim to the time you get the slightest answer, like they purposely make you wait a year before getting to it. After that I don't know lol, I'll discover it when I get there.

So much money is spent in denying people care, that it would be cheaper to just hand it to them without questions, even if you take into account the people that would 'cheat' this system. Who's the real cheater really? the 'doctor' whose job is to say "haha no you don't get benefits :)"

I'm sorry you're going through this. It's mind-boggling that the DWP would leave you like this with no income for months... it's like the cruelty is the point.

They say to take melatonin several hours before your bedtime on one website (like 8 or 9pm), even if you don't go to sleep for several hours. If it helps.

Yeah there's a lot of baggage that comes with classifying it as a disorder and doctors that do know about it seem to think it's something you have to learn to 'manage'. My understanding is people that have good sleep rhythm can learn to sleep at any time over a couple days or weeks, while for me at least my clock is set at a certain time and that's that. I remember as a teen having jet lag it took me weeks to get over it whereas it took my parents just a couple days.

I would start with saying trots call themselves trots or 'bolsheviks-leninists' but never marxist-leninists. I hear a lot about the "anarchists with better takes" but never really see them. The word 'anarchist' by itself certainly means a lot of things but I find that it's often other people that are expected to be okay with someone calling themselves an anarchist, never the anarchist. If 'good anarchists' don't want to be lumped in with the anprims and other reactionaries then they need to find a better word for themselves, but they can't expect that people won't have a reaction to a straightforward "I'm an anarchist" without further elaboration.

Oh I have a lot to say about anarchism if I got started lol

A big reason I opened a disability claim recently was to hopefully get some help around the house. I don't have any delusions that I'll have a care worker (and it's hard for me to accept help so I doubt I'd want that), but even just having the money to hire someone to clean up the house, or drive me around when I have appointments, would be a huge help and give me back some autonomy, in a way.

Thank you. I've been seeing drs basically since these symptoms started and every exam comes back negative, as far as doctors can tell there is technically nothing wrong with me... but i still have symptoms lol

But honestly, there usually isn’t

Exactly every disability is different of course but in my case I like being left alone when I'm feeling sick in the first place and there just isn't anything that helps. Antiemetics don't even do anything. So if I'm having an episode the best thing to do is just let me manage it and also not talk to me because I'm not listening anyway in the moment lol. At best just say "let me know if you need anything" and leave it at that.

Sometimes we don't even know the extent of our triggers or disability! I just ate some pineapple (to be fair it was a lot of pineapple lol) and found out that's a trigger just now. I didn't know that before.

I wanted my list of questions to be stuff I wish people would ask me, and also broad enough to fit in most situations, not just with friends. It's good to ask "how can I make this more accessible for you" or "what should I do if you have an episode", "what are your triggers so I can avoid them"... but you shouldn't ask because you feel obligated to, but because you want to.

It’s also funny how every expert I talk to think that the main source if my symptoms is in their specialty field

Lol same that's why I stopped listening to their theories until we do the tests. It's just upsetting for no reason. the ENT thought I may have menieres, I waited one week to do the test and one more week to see the results and it turns out it wasn't that. We still don't know what it is, but it's not menieres lol

CurseAvoider

@ CurseAvoider @lemmygrad.ml

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1 yr. ago

He him if you're wondering. Anonymous alt account. The name is from a random username generator and I found it funny (ironically) considering the reason I made this account.

CurseAvoider

Dr said "but I mean you're young"

Ask me stuff

Ask me stuff

Ask me stuff

Ask me stuff

Ask me stuff

Ask me stuff

Ask me stuff

Disability and new technology

Disability and new technology

My issues with the spoon theory/analogy

My issues with the spoon theory/analogy

Just found out about Delayed sleep phase disorder... it explains so much.

Just found out about Delayed sleep phase disorder... it explains so much.

Just anarchists

Just anarchists

I miss 2003.

I'm supposed to be doing thinner injections for 10 days but I'm not gonna last that long lol. I'm stopping tonight.

There's no error-free way of offering advice to a disabled person. So here's what you can ask instead.

There's no error-free way of offering advice to a disabled person. So here's what you can ask instead.

There's no error-free way of offering advice to a disabled person. So here's what you can ask instead.

What living with a disability is like

It's not menieres!

Did the menieres test thing. Probably not that but what now

ENT suspects I have meniere's

I don't even know what the problem is anymore

That's right, the saga continues

I went to see the new hematologist

It's amazing that my welfare case worker, acquaintances and strangers on the street understand my problems better than DOCTORS

I'm doing weirdly well today. Too well?

My therapist was useless today lmao

Being "friendly" doesn't save lives