Ask me stuff about disability, symptoms, etc, whatever you like. No holds barred. Can’t guarantee I’ll be able to answer everything but I have nothing but time on my hands.
What’s a simple thing regarding disability that you wish more people understood?
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.
Yeah, it was a bit of an unfair question on my part. Simple things tend to be the hardest to define, sorry! I really appreciate the insight though, thank you.
A follow-up, if you do not mind, is what do you believe should be done or avoided when attempting to offer someone help? Of course, this would vary very widely based on people’s personalities, but are there any general do’s or don’ts or a particular perspective that you might have?
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!
I know that for many disabled people, there are good days and bad days (where things feel either better or worse than usual).
Is it like that for you too? If so, is there anything in particular that makes a “good day” good?
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.
What would you envisage a vanguard party should consider to avoid an ableist overview in its policy making including leadership selection?
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.
Thank you for taking the time for such a detailed and conscientious response! I do not have a reply here to do it justice.
Thanks again
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.
still answering questions if you have any!
CurseAvoider… hm why such name
If yer wondering about my name
I just thought it was hard to register and login to your instance (I eventually made an account)
lol it was generated automatically by an online generator, and I liked the irony.
I was always curious about your username. Couldn’t really think of something Lemmygrad would block an account for but not Hexbear.
