broadwaybabyto , to random
@broadwaybabyto@zeroes.ca avatar

It’s been a particularly difficult week where I’ve been let down by a number of people who I thought had my back… and the rampant ableism in society is wearing on me.

I revisited one of the first articles I wrote about being disabled & chronically ill… and am saddened that nothing has changed. Things haven’t improved and if anything people are LESS tolerant & more ableist now than a year ago.

It all started when someone said to me “you’ve been sick for years - just die already”. Whenever I think of that statement I find myself wondering if people would have EVER said something like that before Covid. Many may have thought it - but would they verbalize it?

The pandemic is fueling hatred of disabled and chronically ill people to the point where they will say the cruelest things without a second thought - and it’s leading nowhere good.

The whole article can be found here: https://disabledginger.substack.com/p/just-die-already

tomkindlon , to longcovid group
@tomkindlon@disabled.social avatar

Vocational rehabilitation for Long Covid: a roadmap for recovery

https://t.co/oqCQPoxwt7

"Long Covid and similar energy-limiting illnesses cause a range of health problems which result in long-term sickness absence and long-term unemployment in an era of workforce shortage."

Hashtags:
@longcovid

@spoonies
1/

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  • PixysJourney , to random
    @PixysJourney@beige.party avatar

    :bear_love: Ello sweet and lovely Friendos 💜 and 🌶 friends :neuro:

    When I joined this server, I made an Toot. As I've recently made some new Friendos here, I wanted to write a new intro Toot!

    I'm Cynni Pixy, nicknames obviously, and I'm a 44 year old female. Though I don't mind the she/her pronouns, I also accept the they/them ones.
    I have a chocolate brown Labrador, who will turn 11 on July 15th. She's the love of my life and has really been my life saver in desperate times in the past.

    I'm / & . I struggle with chronic depression, and an binge eating disorder (so fighting the obesity is a daily thing) and I have some physical issues as well
    The biggest ones are (who took the spoons and why do my muscles hurt that badly?), hypermobility (I didn't know it could bend that far 🤔) and I have a (second) new right hip. The one I got at birth wasn't in the best condition.

    While my AuDHD presses me to keep active and busy and to do better, my fibro just needs more rest... Finding a balance that works is a daily chore!

    I'll be getting the keys to our new small home on July 1st. It's exciting but also anxiety inducing, too many changes all at once! So I'm Tooting loads about that... 😊

    I either Toot my fingers off, or I'll just lurk. I struggle with commenting on other people's toots, it's easier to reply to replies to my own toots. If that makes sense.
    I'm trying to engage more. I try to boost when I can, but no Alt text means no boost...

    Thank you for coming to my Pixy talk!

    :bear_nuzzle:

    Let's join the joyride everybody! 🚗

    🧚🏼‍♀️ 🍀 💜 🐾

    Edit: fixed a small typo...

    tomkindlon , to ChronicIllness group
    @tomkindlon@disabled.social avatar

    Ancient Greek word of the day: κακοθερής (kakotherēs), unsuited to endure summer heat (literally, bad at summer).

    My thoughts are with those with conditions such as ME for which this is relevant.

    Hashtags:
    @longcovid
    @chronicillness
    @spoonies
    @disability
    @mecfs

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  • tomkindlon , to ChronicIllness group
    @tomkindlon@disabled.social avatar
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  • IrishMECFSAssociation , to ChronicIllness group
    @IrishMECFSAssociation@mastodon.ie avatar
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  • tomkindlon , to ChronicIllness group
    @tomkindlon@disabled.social avatar
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  • tomkindlon , to MECFS group
    @tomkindlon@disabled.social avatar
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  • tomkindlon , to MECFS group
    @tomkindlon@disabled.social avatar
    tomkindlon , to longcovid group
    @tomkindlon@disabled.social avatar

    Using co-design methods to develop new personalised support for people living with : The ‘LISTEN’ intervention

    https://onlinelibrary.wiley.com/doi/10.1111/hex.14093

    "The lived experiences of people with , in relation to their condition and their experiences of healthcare services have provided a primary source of evidence”

    @chronicillness @spoonies @longcovid

    tomkindlon , to longcovid group
    @tomkindlon@disabled.social avatar

    🧵
    The Untapped Power of “We Don't Know”: Epistemological Humility in the Era of

    https://journals.sagepub.com/doi/10.1177/23743735241252475

    "There are several arguments for how saying “We don’t know” might benefit patients.

    @longcovid
    @chronicillness
    @spoonies @mecfs

    1/

    tomkindlon OP ,
    @tomkindlon@disabled.social avatar

    2/

    “The absence of epistemological humility leaves an unacknowledged gap between patients’ lived experiences and the (lack of) medical knowledge about their illnesses.

    This gap leaves the provider vulnerable to bias. Racialized, gendered, classed notions about whose bodies are “really” sick may begin to prevail."


    @longcovid @chronicillness @spoonies @mecfs

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