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

"Woman told exhaustion was just ‘A-level stress’ overcomes debilitating diagnosis: Elizabeth Hope, who was diagnosed with ME, has since overcome her adversity to become an award-winning wheelchair dancer"

https://www.independent.co.uk/life-style/health-and-families/me-symptoms-wheelchair-dancing-b2450860.html

@mecfs






@chronicillness
@spoonies
@disability

markw, to bookstodon
@markw@mstdn.social avatar

l just came across this in my bookmarks
Nothing Without Us Too
An anthology of "more stories by authors who are disabled, d/Deaf or hard-of-hearing, Blind or visually impaired, neurodivergent, Spoonie, and/or who manage mental illness."
https://pressesrenaissancepress.ca/
@bookstodon

tomkindlon, to disabilityjustice
@tomkindlon@disabled.social avatar

(UK)
A worrying development for many with disabilities and disabling illnesses

“Disabled people must work from home to do ‘their duty’, says UK minister

https://www.theguardian.com/uk-news/2023/nov/21/disabled-people-work-from-home-laura-trott-benefits

#disabled #chronicillness #disabilities @disability @disabilityjustice @chronicillness @spoonies @mecfs @longcovid #mecfs

johnnyprofane1, to actuallyadhd
@johnnyprofane1@neurodifferent.me avatar

Dear marketers seeking LinkedIn connections...

And I don't mean the usual "I can get you 3000 followers over nite" suspects...

I mean the "sincere" ones...

I may not be your best prospect.

I have a personal thing about...

  1. New connections whose first DM asks for a favor, donation, participation in research, editing or writing help, promoting your pet project...

Or the earnest developer who requests that I test drive a product you're SURE will help disabled folks. For money.

Most especially, folks targeting , and other 's.

  1. I don't like folks making money off my autism. And I don't enjoy transactional social relationships... especially those masquerading as some noble purpose.

I usually just block. But I'm getting sick of it.

This morning's DM finally brought this response from me.

"Honestly I don't try freemium apps that don't outline features for trial, paid, and free versions.

"I understand the value to you of any user's trial... marketing, user data, beta testing.

"I need to understand the value to me.

"That said, it sounds like a valuable app. Wish you luck."

And removed our connection.

Have some sensitivity when marketing to disabled folks, shall we?

Btw, no answer from neurodiverse huckster. Probably busy posting hundreds of DMs to y'all.

.

Dude went totally narcissistic on me. I'm rude & dismissive. Like I owe him trying his product...?⁉️

No clue how to market to folks.

@actuallyautistic @actuallyadhd

Roannasylver, to random
@Roannasylver@wandering.shop avatar

💜 Been here almost a year, so! post 2.0!

🌈 I'm Ro, an and of really weird, (the CHAMELEON MOON and STAKE SAUCE series) as well as (DAWNFALL, THE GREAT BATSBY).

🤘 I'm a and creator, and tend to love other weird/queer things too!

🎃 I'm also a Norse , and dig witchy stuff in general!

🌙 All books and games are on RoAnnaSylver.com, and a thread o' books will follow!

superheroine, to publichealth
@superheroine@disabled.social avatar

@publichealth

my updated booster and my shot.

day 2 and feeling alright!

it's that time of year where we will soon spend a lot of time indoors, and have a lot of gatherings with family and friends, so to protect them and engage safely, be sure to get vaxxed up!

check out this updated COVID19 resource. It's from a Center for Independent Living so it's made by folks (w/ background) and centers disabled people.

https://www.able-sc.org/covid-19/

tomkindlon, to disability
@tomkindlon@disabled.social avatar

The author refers to using the spoon theory so presumably has some energy limiting chronic illness (which is unspecified)

https://www.tumblr.com/i-the-spoonie/724820869881495552

@fibromyalgia @chronicillness
@spoonies
@disability

gabriel, to bookstodon
@gabriel@col.social avatar

@bookstodon

I've just finished "all the light we cannot see". It follows two kids, german orphan, and a blind french girl, in parallel, while their lives get derrailed by the war. Somehow they manage to be true to themselves among the mayhem. Starts slow, but picks up speed. I loved It.

¿How did you liked it?

DarkMatterZine,
@DarkMatterZine@mastodon.social avatar

@gabriel @bookstodon Caveat before I give my opinion: you’re allowed to love what you love. My opinion is NOT a personal attack.

I loathed it. I felt that the book was an attack on my personally and on “my people”, those with albinism and vision impairment. The blind protag’s upbringing was also abusive. For more (review NOT an essay) see this link https://www.darkmatterzine.com/illustrating-doerrs-on-albinism/.
Albino ≠ nazi. Nazis murdered us bcos disabled.

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

10/

"Those with face hurdles every day the able-bodied cannot fathom. If you are concerned that the are getting a “privilege” that is somehow “undeserved,” you are entitled to your opinion but please don’t act on it."


@chronicillness @spoonies @disability @mecfs @longcovid

tomkindlon, to disability
@tomkindlon@disabled.social avatar

It can be useful to get people who are not doctors to write reports about how an illness or disability has affected somebody when applying for disability payments in lots of countries

This document is from the US but the questions could give ideas about areas people in other countries could write about when writing such a report

https://www.ssa.gov/forms/ssa-3380.pdf

#chronicillness @chronicillness #Spoonies @spoonies #Disabled @disability @mecfs #MEcfs #CFS #PwME @longcovid
#LongCovid #PwLC #postcovid
1/

sarahmatthews, to bookstodon
@sarahmatthews@tweesecake.social avatar

Another great list from @fivebooks I read Sanatorium by Abi Palmer when it was published as an e-book but it’s now also available on audio through Spiracle Audiobooks. And Sea Bean is already on my reading list | ‘Living with a long-term condition or is difficult, says Polly Atkin, the author of Some of Us Just Fall. Those affected often feel isolated, misunderstood, or frustrated by their interactions with the medical establishment. But books about will remind you that you are not alone; here, she recommends five memoirs that offer insight into the "kingdom of the unwell."

@disability @bookstodon
https://fivebooks.com/best-books/chronic-illness-polly-atkin/

tomkindlon, to disability
@tomkindlon@disabled.social avatar

🧵
I thought this was very good

"Riding the Roller Coaster of Fluctuating Disability"

https://themighty.com/topic/disability/roller-coaster-of-fluctuating-disability/

"When people think about or , they tend to do so in a very black and white sort of way: Either you are completely , or you are not — this is your permanent status, and your disability (or lack thereof) will affect you the same way today as it will tomorrow.

Were it only that simple"

@chronicillness @spoonies @disability @mecfs @longcovid

1/

essie_is_okay, to actuallyautistic
@essie_is_okay@aus.social avatar

Update to my request for non minty remineralizing toothpaste! Thank you a for your help.

After doing some research it seems I can pretty safely use kids toothpaste that's for 6+ years old. Baby toothpaste has 500ppm fluoride, while kids has the same as adults, 1450ppm. My dentist okayed this.

For anyone looking for your own use, look for kids toothpaste with 1450ppm F, and preferably no SLS (sodium laureth sulfate) which gives the foaming effect.

You can buy unflavoured toothpaste but it's hard to come buy. After researching I've found I can use 2 or 3 different supermarket products, which is so much more convenient than ordering online.

I looked into fluoride tablets, and they are not used or recommended anymore (at least in Australia).

Thank you everyone for your suggestions. Here is the original post for anyone curious. Check the comments for the suggestions I got. https://aus.social/

@actuallyautistic

sarahmatthews, to disability
@sarahmatthews@tweesecake.social avatar

Dr Amy Kavanagh was one of the first blind people I found online when I became blind and I learnt a lot from her. it’s been great to see her journey to becoming a mum and here she is raising awareness in Stylist magazine so brilliantly as always! | “I still encounter surprise and shock that I’m and a parent. I recently had a waitress ask with genuine confusion “is that your baby?” when I was in the middle of breastfeeding. I try to ignore these comments but find I do feel the weight of them on me, especially on those hard, exhausting days.”
@disability
https://www.stylist.co.uk/people/motherhood-blind-mum-experiences/813403

ImmedicableME, to disability
@ImmedicableME@mastodon.online avatar

@disability Requesting help understanding wheelchairs and insurance in the U.S.

I am primarily housebound due to MECFS, hEDS, and POTS. I am able to get around my home using a manual without the footrests, propelling myself with my feet. I recently received a power wheelchair, paid for by my insurance, because my health conditions are energy-limiting and degenerative. 1/

ImmedicableME,
@ImmedicableME@mastodon.online avatar

@disability I’m not able to wheel myself with my arms. I require a caregiver to push my wheelchair if we leave the house. I just want a manual wheelchair that will fit in the car and can be used at appointments and to use with my feet within the house. Is self-pay the only way to do this? And is it true that I can’t get a manual that’s sized to fit me even if I pay for it? Thank you for any insight. /4

hannah, to random
@hannah@social.alt-text.org avatar

Hello, I'm here to seek out a community of other people and accomplices.

I'm working to build a non-profit tool to make alt text easier, and I want to connect with folks who can help guide that project toward a useful start.

I've built a proof of concept, but getting it further will take building community. I'm , and networking does not come easy to me. Boosting this is an immense help.

More information at https://alt-text.org

AAT_transcribes, to academicchatter
@AAT_transcribes@mastodon.social avatar

Twitter was our main marketing channel and it collapsing plus ongoing crisis in UK academia means we’re struggling to survive.

We are proud to offer our , and fairly paid work through our business.

To help us keep doing what we do and for high-quality & for your audio and video, get a quote today: http://academicaudiotranscription.com/our-prices

@academicchatter

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