Queer Cripple - Tumblr Posts
I did a thing go look at it if u wanna see chronic pain stuff :D
Hi! Your "talking about wheelchair blues" post made me curious if you know any disabled folk singers?
Yea, there are actually tons!
in the early blues, there were many blind artists.
Blind Blake (1896-1934) Blind Willie Johnson (1897-1945) Blind Lemon Jefferson (1893-1929) Blind Willie McTell (1898-1959) Bo Carter (1893-1964) Sleepy John Estes (1899-1977) Blind Boy Fuller (1907-1941) Cortelia Clark (1906-1969) Rev. Gary Davis (1896-1972) Roosevelt Graves (1909-1962) Sonny Terry (1911-1986)
there's also cisco houston, whose eyesight was so poor that it rendered him legally blind by the end of his life.
and then, of course, there was woody guthrie who suffered from Huntingtons disease.
A LOT of traditional folk singers were disabled but that fact about them was not mentioned or only mentioned as an afterthought, or it isn't considered a disability. it would be very hard to compile all of these people.
and, as classic artists like pete and peggy got and get older, they both talked more about disability rights and how they affect them, peggy seeger is 89 currently and still making music. both she and Pete have either performed songs like disability in solidarity with disabled people or made music about how being disabled relates to them.
THEN, there's the Disabled In Action (DIA) singers. much like the Freedom Singers of the Student Nonviolent Coordinating Committee (SNCC), the Disabled in Action singers were a musical group that made and covered songs that were about disability rights and disability made upof members with from the DIA organization. the DIA is a grassroots civil rights organization focused on ending discrimination against Disabled people, founded in 1970, in NYC.
the folks of the Disabled in Action Singers were not very well known, and the only one who was, was Sis Cunningham, who joined the group in her eighties.
luckily for us ! they have all their recordings available on their website.
here's some fun live performances i found as well of songs either by the DIA singers or by other people about disability
There is definitely more and I'll reblog this whenever I find more disabled folk artists. if anyone knows any contemporary disabled folk artists feel free to reblog this as well. I know that people in the folk-punk scene have been making music about disability.
Please
DONT
JuDGE PEOPLE
FoR USING AIDS aND ACCESSIBLE ROUTES
Just because we're not outwardly disabled
Just because I'm not paralyzed
Just because my body looks fine, doesn't mean I don't need the help. Often times, like today, it was a choice of using the stairs, or doing my classwork. I picked the latter.
I don't want to be ridiculed for it.
A group of kids at my school saw me going into the elevator/lift yesterday. And they stopped, pointed, and laughed.
To use the lift/elevator at my school you have to have a lift pass and some medical condition that hinders your ability to use the stairs. All students know this.
....the group of students (probably 16 year olds), were laughing and saying that I'm being dramatic and I'm not "properly crippled" (yes, they used the slur)
The majority of the time I don't need a mobility aid,but there are times I do need them (like today).
I try not to use mobility aids in most cases (a. Because I'm subborn, b. Because it makes me stick out as a target, c. I'm still working through internalised ablism and dislike admitting I'm disabled). I don't actively look disabled. But that doesn't mean I don't need it.
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. š„“
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 youāre āworse offā than me doesnāt mean I donāt deserve accomodations!!!
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 donāt treat disabled people better if theyāre 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. Weāll 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, Iām here, and somehow I make it everyone elseās problem.
My appearance as most common fronter got us outed as a system because Iām 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 thingsā¦ happy to answer questions about any of them if youāre curious), dissociation, weaponised tears and sheer fucking willpowerā¦ I wish I could say sheer fucking will was still working, but it is not very well anymore. Thereās 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). Weāve reached the point where our doctors and specialists arenāt sure what to do with us and are wondering if thereās something they have missedā¦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 whoās 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 Iām 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, itās 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 āissueā, we will turn right back around and make them aware of our existence ;)
the pic doesnāt grasp it very well, but we painted the chairās spokes rainbow (and they look super cool when weāre driving it)
Thanks to @disabled-systems for the game <33
Ngl just putting this online makes me feel like shit but I need the help:
Any donations help me so much itās actually ridiculous, I also draw digital art and have commissions open in my DMs!
Again this suck ass that I have to turn to strangers for help but here I am because Iām desperate :)
[share around my page and gofundme if you want reposts are appreciated]
Hi tumblr, I really need the help right now and Iām desperate
Iām 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 Iām coming to tumblr once again to ask for help with finance, Iām really sorry to ask strangers for help but Iām desperate
Please share around, reblog or donate to help me, please any little helps
every single time i see someone after not seeing them for awhile, regardless of how well i know them, they ask me about my mobility aids and my health. i've gotten used to scripting a response, "the doctors don't know", "i've tried this and this and this", "no, i can't walk unassisted", etc.
the fact that it's seen as rude for a disabled person to tell nondisabled people to mind their own damn business when it comes to our health and disability is ridiculous
trying to be goth/punk in community and disabled isn't exactly easy. in my city, goth and punk events within the local scene aren't accessible, especially events with music.
hair loss related to disability, and frankly hair loss unrelated to disability, needs to become less of a laughing matter and something to mock someone about.
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
i got new gloves! my mum got them from a hardware store so iām not exactly sure what type of glove they are. but theyāre super reinforced and fit well :) iām using them tomorrow so iāll keep note of how they work
i went out in my wheelchair to a festival today :)
itās my first time being out for that long while in my chair. luckily, i had my partner and friends to help me whenever i got stuck/my arms got tired.
i did, however, get two blisters on my hands. do any other wheelchair users have suggestions for how to minimize blisters? or any at-home remedies for blisters?