weirdwriter, to bookstodon

I'm publishing the expanded Off the Grid book while it's being edited! You can learn more about it here. The eBook is under a license and DRM free! https://leanpub.com/otg @bookstodon

aby, to random
@aby@aus.social avatar

I'm having quite a shit day, so I bought a doughnut when I was out earlier.

I came home, sat down on the sofa, and took a bite of the doughnut.. just as the phone rang.

I answered, still with a mouthful of doughnut - it was my endocrinologist.

Does she have my house bugged? Is she tracking my doughnut expenses? 👀

tomkindlon, to disabilityjustice
@tomkindlon@disabled.social avatar

On my way to the (on ) protest outside Leinster House (which houses the Irish parliament). These proposals if implemented would make life a lot more difficult for many with and disabling illnesses. 😡

@disabilities @disability @disabilityjustice @mecfs @chronicillness @spoonie

CAETFOOD,
@CAETFOOD@plush.city avatar
tomkindlon,
@tomkindlon@disabled.social avatar
russellmcormond, to actuallyautistic
@russellmcormond@fosstodon.org avatar

The following article really resonates with me.

Culture Determines What Counts as a Disability
https://mosaicofmindss.substack.com/p/culture-defines-what-is-a-disability

@actuallyautistic

russellmcormond,
@russellmcormond@fosstodon.org avatar

@loops @actuallyautistic

I'm also a big fan of this TED Talk to help explain.

https://www.youtube.com/watch?v=A1AUdaH-EPM

russellmcormond,
@russellmcormond@fosstodon.org avatar

@loops @actuallyautistic

I have recently had anti-racism and anti-colonialism as special interests (before I knew what that term meant).

It was with this context that I had an event which removed doubt I am Autistic.

I've noticed how there are many different forms of diversity that have been pathologized over the centuries in certain cultures (time isn't evenly distributed -- pathologizing people based on "race" is still common, and Eugenics is ongoing).

I see some patterns.

tomkindlon, to disability
@tomkindlon@disabled.social avatar
kitoconnell,
@kitoconnell@kolektiva.social avatar

@Grizzlysgrowls @tomkindlon @chronicillness @spoonies @disability @mecfs @longcovid yes I also use a cane partly to signal my disability. With all respect to disabled folks of all kind, I would actually say most disabilities probably look like the last photo.

Moody_Octopus,
@Moody_Octopus@fedisabled.social avatar

@tomkindlon @chronicillness @spoonies @disability @mecfs @longcovid
Depression, Social Anxiety Disorder, Autism

halcionandon, to disabilityjustice
@halcionandon@disabled.social avatar

please

GPs in clinics are waiting for me to:

  1. Go into (I’m not aged.)
  2. To see a (Who works in their clinic.)
  3. Because I don’t fit their business model. (They won’t or me even if I see them once.)

Yes they literally said this.

Someone help me! 😭

@mecfs
@chronicpain @chronicillness
@disabilityjustice



maggiejk,
@maggiejk@zeroes.ca avatar

@halcionandon @disabilityjustice I am in the US and my pain management provider usually only makes me go in every other month I just called for a refill on the off months.

Last month I asked if I could increase my dose by 5 mg a day because I’m just not getting enough coverage with the amount of insomnia that I experience. She agreed but only if I would come in next month rather than call in. I laughed and I was like yeah I can come in whenever I’m like 15 minutes down the road. But I am well aware that they are just trying to get as much revenue as they can before the end of the year. And I’m not objecting because I really do need the extra 5 mg. But it feels gross that it was presented that way.

And man, just having that extra 5 mg if I need it made such a difference, I have noticed that about half the days I don’t even take it because I don’t need it. But knowing I have it if I caused myself extra pain makes it easier for me to do what I need to do because I don’t have to worry that I will be an extra pain later because I can do something about it if I am.

Of course I still have to pace because of the but at least I know I don’t have to put myself to bed at 6 PM on a heating pad because the pain is just overwhelming.

halcionandon,
@halcionandon@disabled.social avatar

@maggiejk @disabilityjustice

If if I came in they wouldn’t help. I’m too complex.

Here they get paid for Telehealth so it makes no doctors difference in terms of money.

I’m severe heading to very and it doesn’t matter they’d rather see me get worse to fit their model

johnnyprofane1, to actuallyautistic
@johnnyprofane1@neurodifferent.me avatar

Tentative title, "Disabled Warrior".

Tentative podcast title, "Actually Autistic? Whatever Doesn't Kill Your Neurodivergent Ass..."

But I need my wife;s input before I get too married to it....

The nice thing about digital art is it never has to be finished. On this one I got too deep into the image. There's a lot going on you can't see cuz the midtones are too dark...

The non-gendered warrior SHOULD be creating themself (to coin language) out of and battling dark chaos, a bright spark headed toward a dim light... they never know if there's a goal...

Plus they wear a blindfold like Lady Liberty.

In the chaos behind them are dim objects of adversity... chains, car wreck, wheel chair, a fallen dove... others I probably forget ...

Working on the post...

@actuallyautistic @actuallyadhd @actuallyautistics

"Friedrich Nietzsche Ist Untoter..." A fantasy 19th-centure book illustration of Friedrich Nietzsche, vandalized by a bright red grafitti x. Next to his name, Friedrich Neitzche in the book plate, black spray-painted grafitti reads "ist untoter..."

GreenRoc,
@GreenRoc@mastodon.social avatar

@shannonpersists

Perhaps you dont have a mental disorder at all.

You may very well be very sane like the rest of us who dont side with the humanity that is figuratively driving themselves off the proverbial cliff.

I was once believing in the illusion that autism is a disease needing curing, but I know better now.

I was never broken from birth. Society broke me, led me to think I had to try harder.
When I needed to be me.

@johnnyprofane1 @actuallyautistic @actuallyadhd @actuallyautistics

shannonpersists,
@shannonpersists@mastodon.social avatar

@GreenRoc @johnnyprofane1 @actuallyautistic @actuallyadhd @actuallyautistics This might sound hard to believe but if I don't take medicine for 2-3 days it will end up being a medical emegency

glightly, to disability
@glightly@mastodon.social avatar

Does anyone know of any good journal articles or essays on how one's perspective on disability rights and/or disability justice can be influenced by whether one is born disabled or later becomes disabled (and how long one has been disabled if one becomes disabled), and one's connection to disabled community? @disability #InternalizedAbleism #Disability

lukethelibrarian,
@lukethelibrarian@mastodon.world avatar

@glightly @disability Bogart, K. R. (2014). The role of disability self-concept in adaptation to congenital or acquired disability. Rehabilitation Psychology, 59(1), 107–115. https://doi.org/10.1037/a0035800 - open-access version available courtesy Oregon State University at https://ir.library.oregonstate.edu/downloads/zk51vj50m

glightly, to disability
@glightly@mastodon.social avatar

The rules for SSDI/SSI and a lot of other ableist policing are like the old trial by water for witches:

If we toss you in the water and you drown, you're innocent and not a witch, but you're dead.

If we toss you in the water and you swim or float in the water we've tossed you in, you're a witch and therefore we kill you by burning you. @disability #Ableism #Disability

WackyIdeas,
@WackyIdeas@mastodon.social avatar

@glightly @disability Thanks - TIL what the definition of sinecure is.

AccordionBruce,
@AccordionBruce@mastodon.social avatar

@glightly @disability
I get nervous lest they notice how much I struggle to file the paperwork to prove I can’t work 😰

ucaccessnow, to disability
@ucaccessnow@sfba.social avatar

At the time UC Access Now released the Demandifesto on the 30th Anniversary of the passage of the Americans with Disabilities Act, the UC Board of Regents had not discussed disability/accessibility for TEN YEARS.

UC Access Now was the 1st org we know of that advocated for a systemic approach to dismantling ableism throughout UC - prior to us, ppl were focused mostly on students, only at one campus. UC brass have ignored us as much as they can, even when cherry-picking things to improve from our analysis.

Yesterday, UC President Michael Drake, MD announced that an Office of Disability Rights will be located within a new Systemwide Office of Civil Rights. https://www.universityofcalifornia.edu/press-room/uc-president-michael-v-drake-md-opening-remarks-november-15-regents-meeting @disability

ucaccessnow,
@ucaccessnow@sfba.social avatar

@disability How will this Office of DIsability Rights go? Well, if we don't see UC acknowledging and relying upon the expertise of UC Access Now coalition members, if we don't see them taking the things currently easily within their power - their own communications, events, training programs, and projects begun hereafter - and making them highest common denominator by default...we know it's just another way of extenuating people's fights for justice...another delay before having to sue in court.

ucaccessnow,
@ucaccessnow@sfba.social avatar

@disability Help us find more folks in the University of California anti-ableist community. Urge your friends to follow this account so when news like this breaks, we can make sure folks know more details than they're likely to get in any media coverage.

aby, to random
@aby@aus.social avatar

Doctor appt today, and he happily wrote up all the pain relief I needed prescribed for my shoulder.

I thought it might be difficult to get him to prescribe endone, panadeine forte, mobic, panadol osteo, and palexia.. but we went over how I was taking them all and he agreed that I was fine with how I was approaching it - and that taking such a variety of things meant actually taking less opioid based meds because I was able to keep on top of the pain with things like panadol osteo.

We also did my mental health plan and I hit a 40 on the K10.. which is Very Fucking High. We talked about that, and about how therapy is helping and that a big part of the 40 score is probably actually pain related as well.

He agreed that I showed great insight into my illness and that I was comfortable with being vulnerable enough to ask for help, so I get to skip hospitalisation (fucking yay!) because I have a good support system and I know how to access acute assistance if needed.

But still, 40 was even higher than I was expecting tbh. I'm usually around a 25-27.

aby, to random
@aby@aus.social avatar

I feel awful.

I woke up having a hypo this morning and I don't know if I still feel gross after that, if I'm getting sick, if it's a fibro flare, or if my body is just overreacting to the sudden change in temperature.

But I feel exhausted, I have such a headache, and my pain is like a 7/10, and I can feel my brain moving slow like molasses.

MorpheusB,
@MorpheusB@aus.social avatar

@aby I always have some snakes or pineapple juice for these!

aby,
@aby@aus.social avatar

@MorpheusB - I had an apple with peanut butter, because the sugar in the apple (shorter acting) will bring the sugar up and the peanut butter (longer acting) will keep it steady

aby, to random
@aby@aus.social avatar

I've started a new Fetlife group for disabled people. It was started after it became apparent that the other group was going to allow chasers to fetishise and objectify disabled people and that the group wasn't safe for us.

It's called Disability and Kink

Feel free to join, if you're interested!

https://fetlife.com/groups/273987

sarahmatthews, to disability
@sarahmatthews@tweesecake.social avatar

Relieved to see this outcome! I was one of the thousands who submitted a passionate response to the consultation @disability | ‘Transport for All, a disabled-led organisation, called it "the best possible outcome", but added that while the government was "eventually swayed, it is appalling that disabled people's concerns were dismissed for so long".’

https://www.bbc.co.uk/news/business-67263931

rosanita,
@rosanita@mstdn.social avatar

@sarahmatthews @disability I read the article and clicked on the parliament testimony link. This part was so true: “It’s completely ludicrous to suggest that disabled people should turn up at a station, use the help point (if they can use the help point) and then wait up to an hour for a mobile team to come out to meet them.”

sarahmatthews,
@sarahmatthews@tweesecake.social avatar

@rosanita @disability Absolutely, it makes no sense!

sarahmatthews, to bookstodon
@sarahmatthews@tweesecake.social avatar

Louise Kenward has compiled a book of essays on nature, Moving Mountains, by 24 #writers who are living with #ChronicIllness or #Disability and it’s published today! | “Moving Mountains is not about overcoming or conquering, but about living with and connecting, shifting the reader's attention to the things easily overlooked by those who move through the world untroubled by the body that carries them.”
Here she explains how the project came about
https://thepolyphony.org/2022/09/20/storytelling-and-chronic-illness-an-evolution-of-time-and-place/
#nature #bookstodon #reading @disability @bookstodon

sarahmatthews,
@sarahmatthews@tweesecake.social avatar

@disability @bookstodon I’m particularly looking forward to reading the pieces by Polly Atkin, Khairani Barokka, Jamie Hale, Hannah Hodgson, Sally Huband, Abi Palmer and Louise Kenward. it’s available online and in bookshops and also as a Kindle e-book:

https://amzn.eu/d/8LTd1bF

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