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halcionandon , to disability
@halcionandon@disabled.social avatar

I really need a home 🏡

Can someone please help me? I’m being &
All you need is a spare room & a heart. Ask anyone you know.

Domestic violence orgs don’t help people. I need someone to take me in. I just need a quiet room.

I need to be safe with care. Please help.

@mecfs @disabilityjustice @disability @chronicillness @neisvoid @socialwork
@multipledisabilities
@longcovid

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

"Gordon Waddell, back pain, the subversion of the biopsychosocial model, and the UK government's development of a victim-blaming approach to disability" by Katie Johnstone (ME/CFS advocate)

https://mecfs.substack.com/p/gordon-waddell-back-pain-the-subversion

@chronicillness
@spoonies
@disability
@disabilityjustice
@mecfs

1/

tomkindlon , to disability
@tomkindlon@disabled.social avatar

This piece on Special Needs Letter of Intent” & others on site were recommended by an ME caregiver. It’s about “provid[ing] the people who will care for your child when you are gone with detailed info only you know”

https://www.specialneedsplanning.com/parents-guide-to-the-special-needs-letter-of-intent

@mecfs @severeme @disability @caregivers

halcionandon , to disability
@halcionandon@aus.social avatar

Applying for the is soul destroying and they keep adding more paperwork and meetings and bullshit just to wear us down.

I submitted my application in April. I’d been working on it for a year. They generally tell you yes or no without 6 weeks. Instead I didn’t get a reply, I was told the application process has changed and they needed more goals and more meetings. First I was told it was optional, now I’m told it isn’t. Which one is it??

I look like this most days and they want more bloody meetings!?

@ndis
@chronicillness
@mecfs
@longcovid
@disabilityjustice
@disability
@multipledisabilities
@neisvoid
@disabilitypridemonth

halcionandon , to disability
@halcionandon@disabled.social avatar

Applying for the is soul destroying & they keep adding paperwork & meetings & bullshit just to wear us down.

Application submitted in April. A year working on it. They tell you yes or no in about 6 weeks. Instead I was told the application process has changed & they needed more goals & more meetings. First optional, now compulsory.

I look like the photo below most days & they want more bloody meetings!?

@disability
@disabilityjustice @ndis

halcionandon , to disability
@halcionandon@disabled.social avatar

Applying for the is soul destroying & they keep adding paperwork & meetings & bullshit just to wear us down.

Application submitted in April. A year working on it. They tell you yes or no in about 6 weeks. Instead I was told the application process has changed & they needed more goals & more meetings. First optional, now compulsory.

I look like the photo below most days & they want more bloody meetings!?

@disability
@disabilityjustice @ndis

tomkindlon , to disability
@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

tomkindlon , to disability
@tomkindlon@disabled.social avatar
tomkindlon OP ,
@tomkindlon@disabled.social avatar

From ABC (Australia)

"Not everyone who uses a wheelchair is paralysed. This is what ambulatory users want you to know"

https://www.abc.net.au/news/2024-06-18/ambulatory-wheelchair-mobility-aid-users/103937484

Here's the extract where the person with ME/CFS talks about her experiences

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





tomkindlon , to disability
@tomkindlon@disabled.social avatar
tomkindlon , to disabilityjustice
@tomkindlon@disabled.social avatar

UK Government Open Consultation
“Modernising support for independent living: the health & disability green paper”

Article with links
https://www.gov.uk/government/consultations/modernising-support-for-independent-living-the-health-and-disability-green-paper

The government has published a series of documents including a Green paper & evidence pack

@disability @disabilityjustice
@chronicillness @spoonies

1/

tomkindlon OP ,
@tomkindlon@disabled.social avatar

2/

There is consultation questionnaire about whether assessment for PIP should be based more on a diagnosed condition or on its functional impact; about the need for assessment and review for awarding PIP, and how to assess fluctuating conditions.


@disability @disabilityjustice @chronicillness @spoonies
@mecfs

halcionandon , to disabilityjustice
@halcionandon@aus.social avatar

Please and share to other platforms.

Seems I’m famous (and real!) and desperate enough to go to the media for help. Yes, the trapped woman in the article below is me.

https://www.thecanary.co/global/world-analysis/2024/05/03/me-cfs-anna-australia/

I’ve tried every level of government and they simply won’t help. Ask people in real life if they have somewhere for me to go. Is anybody an ? I need help.

@covid19 @mecfs @chronicillness @auscovid19 @neisvoid @disability @disabilityjustice @socialwork
@dysautonomia
@dysclinic
@mutualaid

halcionandon , to disabilityjustice
@halcionandon@disabled.social avatar
tomkindlon , to disabilityjustice
@tomkindlon@disabled.social avatar

People with disabilities including a woman with ME complaining about how they have been treated by the Welsh health service

https://www.bbc.com/news/uk-wales-68891090

@chronicillness
@spoonies
@disability
@disabilityjustice
@mecfs

halcionandon , to disabilityjustice
@halcionandon@disabled.social avatar
halcionandon , to disabilityjustice
@halcionandon@aus.social avatar
halcionandon , to disabilityjustice
@halcionandon@aus.social avatar
tomkindlon , to disability
@tomkindlon@disabled.social avatar
tomkindlon , to disability
@tomkindlon@disabled.social avatar
tomkindlon , to disabilityjustice
@tomkindlon@disabled.social avatar

(Ireland)

This is an easy to read summary of the green paper on disability reform that is out for consultation.

https://www.gov.ie/pdf/?file=https%3A%2F%2Fassets.gov.ie%2F270940%2F581637ed-ada2-4cb4-a913-efb099245992.pdf&fbclid=IwAR2Ithrzv1BCYvpqdhq0wKO7AYzrFem9vMOK7q7i3WYyQNn6H6E1DFQw1HU#page=null

With just 2 weeks to go to the deadline for submissions, this document I think is a good place to start if you haven't started reading.


@chronicillness
@spoonies
@disability
@disabilityjustice
@mecfs

1/

tomkindlon , to disabilityjustice
@tomkindlon@disabled.social avatar
tomkindlon , to disabilityjustice
@tomkindlon@disabled.social avatar

Jo Hunt:

My new paper on welfare reform politics and the risk of following the trajectory of stigmatised conditions such as . Includes health & disability White paper, macro-politics of the PACE trial, psy-corporate-state alliances etc.

https://journals.sagepub.com/doi/10.1177/02610183241229050

@longcovid
@mecfs

@chronicillness
@spoonies
@disability
@disabilityjustice

tomkindlon OP ,
@tomkindlon@disabled.social avatar

2/

Hunt outlines the history of the construct of "‘deserving’ and ‘undeserving’ impairment, ill-health and related disability" that causes problems for people with ME/CFS, and likely also for people with .

@longcovid @mecfs @chronicillness @spoonies @disability @disabilityjustice

tomkindlon , to disability
@tomkindlon@disabled.social avatar
halcionandon , to disabilityjustice
@halcionandon@aus.social avatar

& heat stroke no air con live on protein shakes

Everyone coughing no masks. They had party no food for me.

and hungry.

Help me find

@mecfs @dysautonomia @disabilityjustice
@longcovid
@disability

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