Cripple Posting - Tumblr Posts

I did a thing go look at it if u wanna see chronic pain stuff :D

OH MY GOD. THIS.

Both our parents are disabled and our father in particular is f*cking NOTORIOUS for making it a competition.

Fatigued? He's got it worse.

In pain? He's got it worse.

Can't walk? It's just a period.

Bleeding? Actually that time it's us.

Going in for surgery? "They can't do surgery for me"

Hotel? Trivago.

The other week I was saying that it sucks being a disabled teenager because you're constantly left out of able-bodied friends activities and he straight up said "you should try being in your 40s and disabled"

And I'm just sitting there going "Where did I say that you don't have it rough too???? Just because it's hard for me doesn't mean it can't be hard for you too?? Why is everything a competition???"

I was so close to hissing at him and making an incredibly rude comment regarding the fact not everything is about him. Aaannnndd he wonders why we won't tell him things. 🥴

I feel like nobody talks about the generational trauma of having a disabled parent who projects their internalized ableism onto their similarly disabled child.

Like just because you’re “worse off” than me doesn’t mean I don’t deserve accomodations!!!

Mkay so we weren't going to talk about anything related too closely to our country for privacy reasons

However,

After today

I say fuck that.

I want the world to know that the present New Zealand government has just removed most kinds of usable funding for disabled people. Without speaking to the disabled community. And said they are doing it for the benefit of the community.

I never saw myself saying this but I'm with Guy Fawkes. Burn the government to the ground.

Disability services interactions be like

ds: we can offer a support person, or home help, or some level of assistance!

me: ...but i don't want a support person?

ds: we can offer a supportive person to help you live better

me: i just said i don't want a support person

ds: we can give you home help and someone to keep you company

me: are you completely ignoring me. i want to keep what freedom i have left.

ds: we can offer support person, you can pick them, we don't chose them for y--

me: i want to stay as independent as possible!!!!!! i've already lost most of my life to my disability! i was told you'd help me find ways to be independent. having a person to help me will ruin my mental health because i hate being seen as incapable.

ds: oh.

ds: we can offer a support person!

disabled system asks: 1-4, 10!

1. Is your disability invisible, visible or both?

Both: invisible in the way that there appears to be nothing outwardly wrong with us (as doctors kindly keep reminding me) but visible in the way that we use mobility aids almost all the time. We wear a sunflower lanyard in public, and use a mixture of a cane, crutches and a wheelchair depending on the day.

I wish to add, as someone who has looked able bodied, and disabled in various fonts.. people don’t treat disabled people better if they’re in a wheelchair or visibly ill, and some are arguably worse to young wheelchair users.

2. Do you use mobility aids? If so, what for?

We do! As said above. We have a mixture of issues (ranging from endometriosis to POTS to hEDS to fibromyalgia) that create.. well, a mixture of issues XD. We’ll use the wheelchair on bad pain and fatigue days and carry the crutches.. or, on better days, just use the crutches to take some pressure off our knees, and aid as balance. As cool as our cane looks (photos later), we stopped using it as it was giving us pretty severe hip pain on one side from the way we had to lean to get support from it (still my fav visually though).

3. Is there a specific alter/part/headmate who fronts to deal with pain? How do they manage it?

Yes, that would be me. I split when we were very young to deal with injury, particularly blood. As our chronic pain increased, so did the amount of time I spent fronting, until I slowly became our most common fronter. Sucks though, cuz that was never meant to be my job, I was supposed to stay sitting on the sidelines only appearing to deal with first aid and other protector things. Instead, I’m here, and somehow I make it everyone else’s problem.

My appearance as most common fronter got us outed as a system because I’m so drastically different from the common fronters of the time. {its a little more complicated than that but you get the idea}

I manage it with a combo of pain killers (including medicinal CBD, THC, and flower, pregabalin, panadol, ibuprofen, codeine and morphine amongst other things… happy to answer questions about any of them if you’re curious), dissociation, weaponised tears and sheer fucking willpower… I wish I could say sheer fucking will was still working, but it is not very well anymore. There’s only so much one can deal with, and our pain has been getting steadily worse for the past few years with very little support (most of our illnesses have no cure, only management). We’ve reached the point where our doctors and specialists aren’t sure what to do with us and are wondering if there’s something they have missed…but uh, our tests, bloods and results are coming back clean. Looking into that at the moment lol.

4. Do you experience pain variety based on who’s fronting?

Oh hell, do we ever. Certain members of the system *cough* Kyle *cough* have dreadful pain tolerances - I always know when one of them is cocon because our pain skyrockets into impossible levels, even if I’m trying to keep it under control. Certain other members of our sys have average pain tolerances, some age regress to cope, others just curl up in a ball and sob.. depends on the alter - and the cyclical nature of parts of our pain make it difficult to manage, and to recognise how each alter is affected. Plus, it’s hard to compare pain tolerances when each of us have no other/barely any frame of reference.

10. Do you decorate your aids?

YES. We use a combination of spray paint, cheap nail polish, stickers and in the case of the wheelchair, holders designed for prams and bikes (water bottle holder, clips, bells, reflective stripes etc).. aids start out super boring and for us, decorating them and making them prettier is the only way to make them tolerable. And political - if the government is going to make our life into a political ‘issue’, we will turn right back around and make them aware of our existence ;)

the pic doesn’t grasp it very well, but we painted the chair’s spokes rainbow (and they look super cool when we’re driving it)

Thanks to @disabled-systems for the game <33

Never cleaning again I found bugs, cups full of mold, drinks full of mold I've been sipping on and had to throw sm away which is so bad for my hoarder brain

Hi tumblr, I really need the help right now and I’m desperate

I’m a disabled, chronically ill university student in the uk

due to my various illnesses and disabilities I am unable to work and have no support from my family in regards to my disability

I cannot work and my mobility aids are broken and unfit for long term use

so I’m coming to tumblr once again to ask for help with finance, I’m really sorry to ask strangers for help but I’m desperate

Please share around, reblog or donate to help me, please any little helps

gofundme.com

Donate to Help me get a new wheelchair!, organized by Disabled Artist

Hi there! I am a disabled university student in the UK! I have a rare connective tissue… Disabled Artist needs your support for Help me get

the healthcare system is bullshit because two rheumatology departments have refused to see me/take me on as a patient for reasons they refuse to disclose.

cripples deserve better