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Gives No Spoons

@givesnospoons

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Autistic Bed Hag
🗣️ Talks, writes, advises, dreams accessibility
♿ Disabling chronic illnesses
🌈 Neurodivergent
😷 Masker

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A prominent provider of disability services and advocacy announced they had a new team member, "with lived experience of significant disability through close family" 🤔 .

I'm sorry, what?! "Though close family" 🤔. Here's where my brain went with that:

If you form a strong enough bond with a disabled person, then you can send your consciousness into their body and walk/roll around in it for the day. A Freaking Friday style body swap? Or ghostly possession?

Or the technology from the Matrix movies is here now. So you can upload a disabled person’s entire life experiences straight into your brain like how Neo learnt martial arts skills?

Look, there's nothing wrong with having carer or professional experience, but that's not "lived experience of disability".

To have lived experience of disability you must live as a disabled person. You must be disabled. Words, they have meanings.

Lived experience is a very specific, precious resource that I think must be properly identified, protected and amplified.

Also, I want to know who's actually my people. How about you?
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Image description: Both slides have the heading "what is lived experience of disability?" and a venn diagram with two overlapping circles. One is labelled "I am disabled". The overlap is labeled "I am both". An arrow points to these parts and text says "this is lived experience of disability." The second circle is labelled "I am a carer of a disabled person" or "I am a professional working with disabled people." There's a arrow pointing to this and text "this is not".

#disability #disabilityadvocate #NDIS #Autism #disabled by @givesnospoons

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5 months ago

There's a big problem with the NDIS cuts that people aren't talking about yet:

Cutting Community Participation allocations may not cut funding people were spending on assistance to go on social outings.

This is because Community Participation is one of many supports within a big funding bucket (Core) that Participants are allowed to spend from flexibly, ignoring what's allocated to the Core subcategories in their Plans.

A cut to nominal "Community Participation" funding could actually mean a cut to: assistance with self care activities, domestic supports like meal preparation, low cost/risk assistive equipment, consumable products and/or transportation.

Some participants are maxing out their Core budget on vital supports that allow them to eat, wash, access medicine and care for their health. These cuts put them at a high risk of harm and hospitalisation.

We urgently need these cuts stopped or at least greater safeguards put into place.
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Image description: A series of infographics in purple and blue tones. Heading "Cuts to NDIS Community Participation". Two rectangular sections on each slide compare "expectation" vs "reality for some". Each section has a speech bubble with text and pictures illustrating the point.

1) Expectation someone goes to the movies 1 instead of 2 a week. Reality person gets help with toileting 1 day per week instead of 2.

2) Expectation someone goes out for coffee 1 day per week instead of 2. Reality someone chooses between doctors appointments or shopping.

3) Expectation someone goes bowling 1 day per week instead of 2. Reality someone has half the funding for consumables like bath in bed wipes.

4) Expectation cutting Community Participation budget cuts social supports. Reality the government doesn't know what's actually being cut for each participant.

5) Ideal solution = stop the cuts. They fail to take into account the range of ways people are using Core. There is high risk of harm to some participants. A workaround = Create a process for identifying participants at high risk of harm from these cuts and adjusting their Plan to better reflect their spending on Core supports.

#ndis #ndisparticipant by @givesnospoons

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13 days ago

If Well-Washing is harmful to chronically ill folk, what's the alternative? I call it Supportive Acceptance.

It requires acceptance that the person lives with daily illness, they spend a great deal of their time managing their health, they are the expert in chronic illness, and their needs often aren't accommodated by society.

Then an offering of support/supportive question. The easiest defaults are "what do you need?" and "what's been going on?"

What would you add?
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Image description: Title slide says "Well-Washing vs Supportive Acceptance. A guide for allies on how to talk to people with chronic illness". There's a photo in the middle of someone reaching out a hand to a smiling woman.

9 slides with identical format. Top half of slide says "well-washing" with photo of older women with angel wings talking to a child crying in anguish. Bottom half says "supportive acceptance" with the helpful photo from title slide talking to a smiling woman pointing in agreement.

Text in speech bubbles between the characters =
1/ Get better soon - I can't vs Take care, rest up - can do
2/ Try yoga - it hurts me vs What movement are you enjoying now - daily walks
3/ Lose weight - That's the least of my problems vs How's your health-work going? - I'm working on migraine reduction
4/ Those meds are bad - I know but they keep me alive vs How are you doing on the meds? - Good and bad
5/ My aunt cured that - Mine's incurable vs what can I do to support you? - send kitty pics
6/ You're lucky to not work - I miss being paid for my labour vs Are you getting much time for fun stuff? - A little gaming
7/ You're lucky to have a cleaner - I have no quality of life without them vs What are the best supports you have - My cleaner is life-changing
8/ You're here, looking well - everything hurts on the inside vs Are you tired from travel? What do you need? - A soft seat please
9/ No, you don't really need that - I miss out then vs Easy done, what else do you need? - open a window?

#ChronicIllness #chronicillnessawareness
#chronicfatigue #chronicpain
#spoonie #spoonielife #autisticspoonie #disability #DisabilityAcceptance #WellWashing #endometriosis #addisons #mecfs #longcovid A series of Infographics about how to have supportive conversations with chronically ill people with illustrated examples by @givesnospoons

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3 years ago

After an extra tough few days in the disability world and with my health, I'm coping with a little help from Grogu! I hope this brightens up your week too.

I'm supporting @frocktober_ocrf and my friend @carlyfindlay's fundraising campaign from bed. Donate if you can. Follow along for fun and to learn more.

Also go check out @michelle_roger who's doing an amazingly creative spoonie-style daily frock-up.

This week I'm wearing:

Zing Pop Culture Mandalorian pillow cases (old) from @zingpopculture
Bambury moss ultraplush blanket from @templeandwebster
Koo Brown sherpa blanket from @spotlightstores
Sheridan cream top sheet, a hand-me-down
Fitted sheet for an adjustable bed @itfits_sheets_aus
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Image description: Slides all on a deep purple background with light green heading "Frock up my bed!" and "Frocking Friends". Two selfies of Charlie in her bed. She is a bespectacled curvy white person with a dark brown pixie haircut. She is lying on a pillow with Grogu on it, gazing up at him and wearing white cat's eyes vintage look glasses. Photo of her bed in her bedroom. It's dressed in greens, creams and brown.

The final slide has a picture of Carly, a woman with red skin and short dark curly hair, wearing a pink floral top, green bomber jacket, jeans and bright pink shoes. Charlie is wearing purple overalls with a mushroom pattern and holding a blue walking stick. The link to donate to Carly's Fundraiser is at the bottom of the pic.

#frocktober #spoonie #ovariancancer #frocktober2026 #spoonielife Charlie in bed by @givesnospoons

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12 hours ago

This is about about getting loud, getting the real word out to the public, recording data for others to advocate and/or creating a record of what's happening to disabled people to hold the government accountable later on.

This isn't for everyone, and speaking out has lead to retribution against some advocates. But it's one of many tools for NDIS Participants coping with the NDIS cuts.

These are the options that I can think of. Do you have others? Who's doing a good job of listening to and amplifying disabled voices about the NDIS?

Edit: The slide should say "your local federal member of parliament".
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Image description: Slide with purple background. Heading in orange textbox "tools for dealing with the NDIS cuts Part 3". Subheading in light blue box "places to report and share harms." Cartoon fist holding a spanner at top and mouth open at the left side. Text coming out of mouth

"NDIS Changes Feedback Form"
(People with Disabilities Australia)

"The Harm Tracker Tool"
(Australian Neurodivergent Parents Association)

"Share Your Story" (Every Australian Counts)

Write to Mark Butler, your local Federal Minister, Senator Jordon Steele-John

Speak to a journalist - Powerd Media, Nas Campanella, Rick Morten
"NDIS Changes Feedback Form" (People with Disabilities Australia) "The Harm Tracker Tool" (Australian Neurodivergent Parents Association) "Share Your Story" (Every Australian Counts) Write to Mark Butler, your local Federal Minister, Senator Jordon Steele-John Speak to a journalist - Powerd Media, Nas Campanella, Rick Morten.

#NDIS #ndisparticipant #ndisaustralia by @givesnospoons

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7 days ago

I'm frocking back with a new outfit of the week!

(Or should that be infit or unfit? 😂)

I'm supporting @frocktober_ocrf and my friend @carlyfindlay's fundraising campaign BedHag Style.

Also go check out @michelle_roger who's doing an amazingly creative spoonie-style daily frock-up.

Being mostly bedbound, I live in my bedding. I wear my bedding. So let's frock it baby! This week I'm wearing:

Pillow case from @sageandclare
Corduroy Comforter from @morganandreid
Vintage bedspread from my local vintage buy swap sell group
Fitted sheet for an adjustable bed @itfits_sheets_aus
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Image description: A series of photos of Charlie in and on her bed. She's a white curvy femm wearing a bright floral jumper and red glasses. She is posing in an exaggerated fashion.

Her bedding is a clash of deep purple and red floral patterns, a pale orange Corduroy blanket in the middle, and deep blue sheet. Each slide has a purple with green outline heading in funky and curved font.

Headings say "frocking my bed, frocking fabulous, frockalicous, feeling frocking, frock ovarian cancer, Frocktober fundraising."

The final slide has a picture of Carly, a woman with red skin and short dark curly hair, wearing a long, puffed sleeved purple, black and teal dress, sunglasses and pink boots. Her hands are on her hips. She’s looking fierce. The link to donate is at the bottom of the pic.

#frocktober #spoonie #ovariancancer #frocktober2026 #spoonielife by @givesnospoons

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8 days ago

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15 days ago

Part 2 of tools for dealing with the NDIS Cuts. This one covers information to understand what's happening.

@commongrounddisability Team DSC and @selfmanagerhubndis have articles analysing the changes.

@everyaustraliancounts and @pwdaustralia have webpages summarising the changes and resources that are available.

PWDA has a recording of a recent community seminar about all the new changes coming in. They have a timeline of the changes and have said they'll be releasing fact sheets soon.

@thegrowingspaceaustralia has been posting videos on FB about the changes, and is running a paid workshop on changes to the NDIS laws.

The Department of Health, Disability and Aging's webpage has more comprehensive info than the NDIA.

What have you seen that's been useful? Who else is good to follow for reliable information?

I'd love to see and share more disabled people/participant perspectives and analysis on the cuts.
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Image description: Two slides on the same template with a purple background, orange header text box with "tools for dealing with the NDIS cuts Part 2", blue subheading box "information about what's happening". Cartoon picture of a fist holding a spanner at the top. Main text similar to above.

#NDIS #ndisparticipant #ndisaustralia by @givesnospoons

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15 days ago

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17 days ago

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17 days ago

Big NDIS changes are starting NOW. I'm seeing lots of "don't panic" messaging. But this is going to be a big deal for some participants.

Some Participants have tight NDIS budgets. They use it all for vital supports. There's no excess fat to trim. They have no backup support. Cuts put them at real risk of harm.

I've shared all my ideas about surviving this.

Yes, these are imperfect solutions and this SUCKS!

No, I'm not suggesting that anyone does all of these. Take or leave whatever you want. It's free.
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Image description: Series of slides all with a blue background and lime green header box with "WTF are they doing to our NDIS Budgets?!"

1) Has a picture of scissors cutting.
2) Explains "Budget Resetting" is cutting. Support workers to take us out will be cut by 50% and therapies cut by 10%. Pictures representing these supports are being cut by scissors.
3) Outlines two exceptions. Support for employment (don't know how this will work) are excluded. Participants with 24/7 NDIS funded care can appeal their Social and Community Participation budget reset. Picture of a woman making a small hand gesture.
4) Explains that all Plans will be reset over the next 12 months during Planning meetings. If you don't have one scheduled during this time, they'll arrange a Plan Renewal to apply the reset. There's no hiding from this. Pictures of a rabbit hiding.
5) Suggests checking spending on CB Improved Daily Living Skills. Action may be needed if you spend most or all of this budget. Ideas include shorter sessions, sessions less often, getting a cheaper prices and using Medicare.
6) Suggests checking spending from overall Core budget. Action may be needed if you spend half or more.
7) Explains how to recalculate your Core budget. Find Social, Civic and Community Participation budget, calculate 50% cut to this, subtract this amount from total Core. Compare to usually Core spending. Will you have enough?
8 and 9) Ideas for reducing and replacing Core spending. I'll pop these in comments.
10) People and organisations who may be able to advise on all this. I'll pop these in comments.

#NDIS #ndisparticipant #ndisaustralia #ndisjourney by @givesnospoons

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20 days ago

I'm starting extra NDIS butt-covering now.

This isn't about trying to get away with doing anything wrong or bending the rules.

It's about protection from new laws that weren't written by us or for us.

I don't want to be left to personally pay invoices when providers send them through late.

I'm also concerned for my friends who Self Manage their funding and don't / can't always claim within 90 days of a service...because disability s*** happens. Beware folks!

My answer here = paperwork! I'm just a participant. I'm not a lawyer. I can't guarantee what I'm doing will prevent payment liability.

Thank you to the @thegrowingspaceaustralia for providing guidance on this issue 🙏.

I urge Support Coordinators and Plan Managers to consider assisting their clients with this.
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Image description: Slide series with a deep blue background and hot pink heading box "NDIS Changes: Butt Covering for Users".

1/ Picture of a guy looking at a bill with shock. Text urges NDIS uses to act now to avoid paying late invoices.

2/ Picture of a stamp with "claim denied". Text talks about a change to NDIA rules, they won't pay claims more than 90 days after a service.

3/ Picture of David from Schitts Creek looking perplexed with "it's a write off". Text questions if providers will bill old bills.

4/ Picture of Johnny Rose from Schitts Creek looking shocked with "it's not a write off". Text says I had an experience with a large provider sending me invoices 20 months late.

5/ Picture of Vincent from Pulp Fiction looking around. Text explains the provider ignored my pleas to write off the invoices and care stopped when money was involved.

6/ Screenshot from a GrowingSpace participant checklist advising to ask providers for outstanding invoices, to check service agreements for personal liability to pay invoices and to amend agreements where needed.

7/ Text explaining what I'm doing about this = getting Service Agreements with all my providers, adding a clause about not paying invoices received more than 75 days after a service, and keeping a diary of supports and invoices received.

#NDIS #ndisparticipant #ndisaustralia #NDISprovider #ndisjourney by @givesnospoons

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a month ago