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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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Last week an article was published that misrepresented the reason young women use walking sticks. If you want the honest answer to why young women are using walking sticks, you’ve got to ask them.

Fortunately those perspectives are readily available to us on social media. We wanted to share some content from those with lived experience that help to answer the question better:
@presentedbyjo
@flicjackson
@wayfarer_mobility
@iamjessiara
@givesnospoons
@neurosparklysaffy
@lannimade

Whose content has deepened your understanding of disability or chronic illness? Tag them below👇💜

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Journey to Planet Disability Support Services - read @givesnospoons story about moving from a customer to a disability customer.

After 40 years using services in the community, I had mastered being a customer and working with a variety of different businesses.

Then, my disabilities skyrocketed, landing me in NDIS territory. I thought I was well-prepared to use disability support services, but it was like being transported to a different planet where my prior customer service experiences were excess baggage and service providers’ behaviour was alien.

On arrival at planet Disability Support Services, I explained I would be paying for services using NDIS funding. Not being a paying customer, I was issued a Tourist Visa. As a tourist, disability providers entertained my presence but did not always take me seriously.

For example, the first large disability support agencies who I encountered were more interested in my “hobbies” than talking business.

When I requested assistance with housework, they mistranslated this into “our workers can sit on the couch with you watching movies”. It felt like we were speaking in different languages.

Read the full story on www.powerd.media under “Articles” or “What’s New”.

Alt text is available on each image. Green text “Journey to Planet Disability Support Services”, an image of planets with rings around them on a black background, and the green and white Powerd audio icon at the bottom.

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🚀 Powering Through Fatigue!    As an Occupational Therapist at Cas Health, we know how frustrating chronic fatigue and poor endurance can be for individuals. For some of our clients’, conserving energy is key to maintaining independence and enjoying daily life. That’s where a power wheelchair can make all the difference!    We recently trialled a power wheelchair with an NDIS participant to support their energy conservation and goals.    Here are 3 key benefits we’ve seen in action:    1. Improved Function and Participation-    A power wheelchair reduces the physical effort required for mobility, allowing clients to focus their energy on activities they love—whether that’s cooking a meal, spending time with family, or pursuing hobbies.    2. Enhanced Safety-    For clients experiencing fatigue or physical limitations, a power wheelchair helps reduce the risk of falls or injuries from over exertion.    3. Greater Independence-    By reducing reliance on others for mobility, clients can regain control over their day-to-day activities.
 At Cas Health, we specialise in helping people find tailored solutions like power wheelchairs customised to their individual needs to improve their function, participation, and independence. ✨    👉 If you or someone you know could benefit from assistive technology like this, reach out to us today! We’re here to guide you every step of the way—from assessments and trials to equipment prescription.    📞 Call us: 0473 864 265  📧 Email: admin@cashealth.com.au  🌐 Visit: www.cashealth.com.au    Follow us on our socials for more updates on how we’re supporting individuals to achieve their goals. Together, let’s make a difference! #occupationaltherapy #ndis #cashealth #assistivetechnology

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🐙 It is week 3 of #MEawareness month 💙
This week I will be sharing a little bit about my background, and how aspects of my childhood contributed to me developing #ME.

This is #Part1 💙. It touches on a migration culture, being neurodiverse in a neurotypical world, and the impact of bullying on mental health of teenagers 💙.

As promised, the final photo includes a recommended list of #MEwarrriors &/or #LongCovidWarriors you should consider following if you have #ME &/or #LongCovid 💙

🐙xx

Are you neurodiverse too? 💙

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May is ME/CFS Awareness Month!

ME/CFS is short for myalgic encephalomyelitis / chronic fatigue syndrome. Some common symptoms of ME/CFS are overwhelming fatigue, worsening symptoms after physical or mental activities, and problems with thinking, sleep, pain, and dizziness. People with ME/CFS cannot function the way they used to before getting sick and often struggle with daily tasks, attending work or school, and having a social life. One in four people who have ME/CFS is house or bed-bound.
(Source: CDC: What is ME/CFS)

Post-exertional malaise (PEM) is a flare-up of symptoms or the appearance of new symptoms after exertion. Physical activity, mental overexertion, and sensory overload can all trigger PEM.

Exertion is anything that can stress or strain the system, not simply exercise. Some triggers include exercise, standing or positional changes, long conversations, scholarly work, loud noises, bright lights, emotional interactions, and environmental changes.
(Source: MEAction Pacing Management Guide)

Pacing is a strategy to balance rest and activities in daily life, to manage symptoms, especially fatigue. People living with various health conditions, including ME/CFS, fibromyalgia, and chronic pain, utilize pacing to help with symptom management.
(Source: Long-COVID to Physio)

When an individual stays within their “energy envelope,” they have determined their energy limits for mental and physical activities and stay within them. According to a recent study on ME/CFS, energy envelope theory asserts that “patients who maintain their expended energy at a level consistent with their available energy will have better health outcomes and quality of life than those who over-expend their energy levels.”
(Source: Examining the Energy Envelope and Associated Symptom Patterns in ME/CFS: Does Coping Matter?)

Helpful Resources to learn more about ME/CFS are: @meactnet @solve_cfs @goblueformecfs

Continued in the comments…

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Beach Babe incoming! 🌴 Charlie @meanderingpark is looking absolutely fabulous in the sun! 🐚

Remember to follow us on @keshetdesign and share YOUR Keshet pics! TAG US @keshetdesign #mykeshet For a chance to WIN a $200 Keshet voucher and be featured on our feed! 🌈 Visual Description: This is a picture of Charlie @meanderingpark standing on the beach in front of the ocean. Charlie is wearing our Zoe Singlet in Jelly Reef Olive with relaxed brown pants and sunglasses.

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Absolutely GORGEOUS! 😍 We are so grateful for all of your support, Keshet Babes! 💕

Remember to follow us on @keshetdesign and share YOUR Keshet pics! TAG US @keshetdesign #mykeshet For a chance to WIN a $200 Keshet voucher and be featured on our feed! 🌈 This is a static image grid composed of 9 various images of our gorgeous customers in their Keshet Design purchases!

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Look at all of you STUNNING Keshet Babes! 😍 Find YOUR Keshet Style during our 20% OFF storewide sale today! 🛍

Remember to follow us on @keshetdesign
and share YOUR Keshet pics!
TAG US @keshetdesign #mykeshet For a chance to WIN a $200 Keshet voucher and be featured on our feed! 🌈

*20% OFF Storewide excludes Gift Cards This is a collage of 9 pictures featuring our customers wearing their Keshet outfits.

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#Ad

Something I've loved about being a LEGO ambassador is the way it's given me time to play. Play really is a superpower - enabling rest, relaxation, adventure and creativity. From building a LEGO set on date night with Adam, to packing a small LEGO project in my suitcase when I travel for work, it's really been a way to bring on positive feelings. And I get a beautiful creation to keep and admire - which is great for me, getting a tangible outcome while resting!

I recently had a picnic in the park with friends, and we built with LEGO bricks. We made the flowers and did some imaginative play. The LEGO picnic was so much fun - snacking, playing, problem solving and laughing together. Our table spread was a feast for the eyes and stomach too - filled with Christmas snacks! Such a good way to end the working year and celebrate the festive season.
💐
#LEGOPartner @lego #LEGO
💐
Images: Debz, Carly and Charlie, standing at a picnic area, holding LEGO creations. They're all wearing bright colours. 2. LEGO flower in a square LEGO vase, on a picnic table, the river and sky is blurred in the background. The table is covered with a colourful picnic rug. 3. Purple LEGO flowers lying on a table, next to chocolate ginger slice. 4. Charlie, Amelia and Debz at a picnic table, making LEGO. The table is covered with colourful picnic rugs, food, drink and LEGO. 5. Carly building the LEGO case, a plate of berries and mince pies are in front of her. 6. Two boxes of LEGO on a picnic table, food and drink are atop a colourful picnic rug.

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Let’s Talk DISABILITY TAX (yes, it’s a thing!)
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Being disabled is costly. A lot of us are unable to work or face major barriers to stable employment, and even after that, we still have to pay more just to live as we are. Some of us are fortunate enough to have government funding for carers or support workers to help manage our daily lives, while others are not.
The “disability tax” is not a literal tax like what you pay to the government on things like sales or income, it’s a metaphor for the extra costs of being disabled. Non-disabled people usually think of this as being the extra money paid for “everyday convenience”, but in the disabled world, convenience doesn’t exist, it is just called “access”.
Non-disabled people have paid the disability tax when they’ve been stuck in bed with a cold, likely by ordering food delivery. For some of us, that food delivery is the only way we can eat.
Non-disabled people might feel sick at work and need to come home by taxi. For some of us, taxis are the only option, otherwise we would be unable to go anywhere because public transit or driving is not viable.
Non-disabled people can buy and prepare fresh food from scratch. For some of us, we need those pre-cut vegetables and instant meals.
The idea of access has always been centred around the non-disabled world as mere convenience (food delivery, pre-cut produce, point-to-point transport services, etc). This does not focus the needs of disabled people at all, however, it is crucial to understand that these things are immeasurably important to the disabled community.
It is ableist to view “conveniences” like pre-cut food as “unsustainable”, noise-cancelling headphones as a “luxury”, sunglasses as “fashion”, a smart phone/tablet as a “privilege”, using elevators as “lazy”, driving a car as a “bad for the environment”.
These are all forms of access and the extra costs associated with acquiring or using them can be astronomical. This doesn’t even mention disability specific aids or medicine, these are just everyday things; we pay the disability tax on everyday things.
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[ID in comments]

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It's Disability Day!

To me, Disability means community, culture and identity. It's so wonderful being a part of the disability community. Disability is broad. It encompasses physical disability, diverse mental health, sensory impairments like Deafness and blindness, cognitive disability, neurodivergency, chronic illness, and dynamic disability – that is, conditions that change in severity from one day to another. And external barriers, and sometimes our bodies, are disabling. The experience and presentation of disability is diverse. Please listen to and learn from a range of disabled people - we aren't homogenous.

If you're looking for some disabled people to follow, here are some amazing friends of mine!

💜 El Gibbs (@bluntshovels) - policy and media expert, mentor, gardener, writes at elgibbs.com.au, mostly found on LinkedIn

💜 Sarah Firth (@sarahthefirth) - artist, graphic recorder, Bogong moth cosplayer, her amazing graphic novel Eventually, Everything Connects is in bookstores now.

💜 Charlie Park (@meanderingpark) - advocate for people with energy impairments and who are Neurodivergent, Covid safe advocate, colour lover.

💜 Emily Jane (@ramblingravioli) - advocate for Covid safety and people with long Covid, cat mum, brooch lover, organiser of #ConnectingGaza - crowdfunding to send ESims to Gaza.

Go check them out!

Image: a collage featuring four photos of me with friends - in the order as above.

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I was interviewed recently by journalist & advocate Zoe Simmons about my experiences living with MECFS in Australia and abroad. Thank you Zoe for your work & advocacy. 💕

#Repost @somethingbeginningwithz with @use.repost
・・・
It's ME/CFS Awareness Day!

ME/CFS is a very misunderstood and very stigmatised condition--and we need to talk about it.

That's why I've created this little thread about ME/CFS, its symptoms, issues facing the community, and quotes from several awesome advocates.

Thanks to @elizacharley, @meanderingpark (represented by @championhealthagency) and @nataliahodgins for sharing your thoughts for this post.

Feel free to tag any other advocates, organisations or accounts fighting for the ME/CFS community! I’ll tag them in the post as I go ♥️

Starting with: @alice_rumble @andrewbretherton @emergeaustraliainc

ID in alt text.

#MECFS #MECFSAwarenessDay #ChronicIllness #InvisibleDisability #MECFSAwareness #MECFSWarrior #disability #DisabilityAwareness #DisabilityAdvocate #Disabled #DisabledBlogger #ChronicFatigue #ChronicFatigueAwareness #ChronicFatigueWarrior #ChronicPain #ChronicIllness #ChronicIllnessWarrior #ChronicIllnessCommunity #GoBlueForMECFS #Spoonie #SpoonieLife #SpoonieWarrior #SpoonieCommunity #PostViralIllness #myalgicencephalomyelitis #myalgicencephalomyelitisawareness
#MEawareness #WorldMEDay #postexertionalmalaise

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