Pink Liv

Today I've been a lot weaker and in more pain than normal, so I'm not functioning well. But this made me realize... im still valuable. I'm still helpful. Nobody else on my team notices that stuff. And I've noticed a lot of disabled patients, esp ones with mobility aids, seem comforted by my presence, especially if I'm the one checking them in and looking after them.

Made me think about how diversity hires are fucking great. I am valuable in my role in part BECAUSE im disabled. Because I have unhelpful shitass doctors. Because I can and will advocate for them to the point that I make myself a nuisance on their behalf.

people look at wheelchair users and think "well you're sitting down all the time that doesn't take effort" no actually it does. pushing a manual chair takes a lot of fucking effort, especially without a power assist. repetitive stress injuries are a huge problem manual chair users encounter all the time. going up hills and ramps is so deeply fatiguing.

this doesn't just apply to manual chair users btw. power chair usage can also be really exhausting, especially for people with complex seating needs. going over bumps and cracks can trigger many symptoms such as spasticity, pressure sores are common, even just sitting upright can be exhausting for many people.

Powerchairs, especially those with minimal or no suspension, transfer vibrations from every bump on the ground to the person using them. That's not the same as sitting in place or sitting in a car. You also have to keep a high level of spatial awareness and proprioception at all times, and operate your chair without the biomechanical and proprioceptive feedback our brains expect to come with movement. And the body can respond in unhelpful ways to the alternative way of moving, including muscular impacts in areas you wouldn't think of when considering what muscles are active during walking - like deep back and neck muscles. Discomfort and injury related to sitting position is common in powerchair users, and tools like recline and leg elevation can't fully mitigate this - and not all chairs have those features.

i’d be remiss to mention the cognitive part of this— even though a certain amount of situational awareness is needed for walking at all times, I need more of thag in my powerchair, which is really exhausting when having a fatigue disorder that effects me cognitively. When I’m very exhausted, I am more likely to get lost or do things like cross the street without looking just because my brain isn’t operating correctly.

Anyway, all this to say, driving a powerchair is a very difficult skill lol. The solution to this is more accessibility in part but also, for me, using my pushchair at times. I’m lucky enough to have caregivers who are good helpers (being a Wheelchair Pusher to someone who can’t push themselves at all is also a skill! For example, @windupvictrola especially is very good about asking me where I want the chair to be aimed so that I can actually see what everyone else is looking at rather than being just aimed at the wall.) I’m rambling but things like gender neutral bathrooms are also important for this! When I’m with my dad, he can’t take me into the women’s bathroom in my pushchair, for example.

people look at wheelchair users and think "well you're sitting down all the time that doesn't take effort" no actually it does. pushing a manual chair takes a lot of fucking effort, especially without a power assist. repetitive stress injuries are a huge problem manual chair users encounter all the time. going up hills and ramps is so deeply fatiguing.

this doesn't just apply to manual chair users btw. power chair usage can also be really exhausting, especially for people with complex seating needs. going over bumps and cracks can trigger many symptoms such as spasticity, pressure sores are common, even just sitting upright can be exhausting for many people.

Powerchairs, especially those with minimal or no suspension, transfer vibrations from every bump on the ground to the person using them. That's not the same as sitting in place or sitting in a car. You also have to keep a high level of spatial awareness and proprioception at all times, and operate your chair without the biomechanical and proprioceptive feedback our brains expect to come with movement. And the body can respond in unhelpful ways to the alternative way of moving, including muscular impacts in areas you wouldn't think of when considering what muscles are active during walking - like deep back and neck muscles. Discomfort and injury related to sitting position is common in powerchair users, and tools like recline and leg elevation can't fully mitigate this - and not all chairs have those features.

this genuinely makes me so mad. some of you really don’t deserve fanfics. at all.

comment like this, besides the ai witch hunt, is one of the reasons why fanfic writers don’t want to post their fics anymore.

we write for free. whenever we can. whenever we have time. whenever we’re not too exhausted by life and responsibilities. we write for our own enjoyment. as a hobby. not a job. we update whenever we can. whenever we want. we do not owe anybody anything.

one of my favorite fics was updated after literal 13 years. but the point is that fanfic writers do not owe you anything. whether a fic was abandoned forever or updated after a decade or two is not something you as a stranger has a say in.

stop being entitled. stop treating fanfic writer as a content farm or a machine that produces contents for your enjoyment.

Remember you are a guest in this space. I don’t know a single person who would rather you shit yourself or get assaulted than use the disabled toilet, but please remember that these toilets are built and designed for disabled people after a huge amount of campaigning and activism.

Don’t touch or move things you don’t need to. If you’re not familiar with how things work or why they are where they are just leave it be. The position of a bin might not mean anything to you but it could be really important to a wheelchair user who needs to change their tampon. Don’t touch things like grab rails either – while they’re fairly tough and you’re unlikely to cause any damage it’s not impossible and if you don’t touch it, you can’t break it.

Related, but important enough to have its own point: please don’t touch the red cord. Do not tie it up, do not wrap it around anything, don’t tuck it behind a bin. Don’t touch it (The only exception to this is to untie a cord that’s been tied up) If the cord doesn’t fall freely to the floor it could prevent a disabled person calling for help in an emergency. If you’re worried about accidentally pulling it there’s almost always at least one reset button in there with you. Press that and it cancels the alarm.

If possible allow other people waiting to go first. A lot of disabilities, both visible and less apparent, can cause problems with incontinence, urgency or pain that make it difficult for someone to wait to use the toilet. If there’s someone else in the queue and you are able to do so, offering to let them go first might really help them out.

If you want to get a radar key, get it from disability rights UK or give a small donation to a disability charity (again only if you’re able to). I’ve seen a couple of trans orgs giving away free radar keys and it’s unclear how they are being sourced. Knockoffs are common but only “real” RADAR keys are from Disability Rights UK and any profits help fund their charity work. Bear in mind that most disabled people also have to pay for these keys which are about £5. (Disability Rights UK say their keys are to be sold to disabled people or organisations only, this is a legal thing they have to say about VAT relief. There is no real way of following up how disabled someone who buys a radar key is because you don’t need to claim any benefits to be eligible for VAT relief and keys are a low value item that isn’t worth anyone looking into when things like adapted cars exist. Be gay, do crime, support disabled people having rights.)

Know the difference between a standard accessible toilet and a changing places toilet. Don’t use a changing places toilet if there is any other safe option. These have a different symbol and are bigger and fitted with extra equipment for severely disabled people and our carers. That equipment is more sensitive than anything you’ll find in a standard accessible toilet so if you do find yourself in one touch nothing. Especially don’t move the hoist (lifting equipment) as it can cause it to run out of power and make the whole space functionally useless if it’s not in the right space on the track. (To be fair this is an unlikely scenario as there aren’t that many of these toilets, but just in case)

this is the kind of violent ableism im always talking about. you did not need to wish death on vulnerable people. medical care professionals literally exist to facilitate life for people who would otherwise die. shall we just do away with the medical field as a whole?

and as for the value of severely disabled people’s lives… people who need care can have rich, complex, wonderful lives and can have beautiful impacts on the people they know. my carer talks so highly of her clients that need constant care. they are loved and appreciated even by the people who aren’t required to love them.

I feel like 7 hours a day on average is plenty. Like I will wear my processors all day at work but then not very much when I'm just at home or on the weekends. Like I just have them on when I actually need to hear stuff.

Also, it's not like it's hindering my progress with the implants. My speech discrimination is in the top 10% of cochlear implant users. So I feel like it's not really that necessary for me to be wearing my processors all day every day to get the benefit from them.

Also FYI, I am a grown adult (26) and it just seems a bit invasive to have my audiologist able to see my time "on air" (yes, that is the official term). Like quite frankly I don't really think it's any of their business.