• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Video on why the social model applies to chronic illness

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
I like this guy speaking up like this for those who are "disabled". Disabled doesn't even seem like the right word...
There are many talented people who have a lot to offer, but who have chronic illnesses.
Why should they be sidelined, or have to crawl on their bellies for benefits -and even those sometimes hard to get?

I think the working "world" really hasn't bothered to make a place for those people. The work world is all about rigidity, not flexibility, on average anyway. Rigidity about how the work day should go, rigidity about who works at home and who works in-house, rigidity in timing (you arrive at a certain time and leave at a certain time etc)

I loved the story about that guy who went to the festival (in the mud) in his bed! Yay!
I wonder if that was Glastonbury?
Famous for its mud.
I live quite near to the festival site. When the wind is in the right direction I can even hear the concerts from the main stage!
 

PracticingAcceptance

Senior Member
Messages
1,858
I loved the story about that guy who went to the festival (in the mud) in his bed! Yay!
Me too. I want to know how he made that happen. Orchestrating that would have taken a lot of preparation - and imagination, and determination.

I've connected with someone on Facebook recently - an ME/CFS activist who has a reclining wheelchair, and asks for beds to be installed in places she wants to go. That's so inspiring to me. We need beds - so why not have them in places we go? It would make shopping a lot easier, if I could take lying down breaks.
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
Me too. I want to know how he made that happen. Orchestrating that would have taken a lot of preparation - and imagination, and determination.

I've connected with someone on Facebook recently - an ME/CFS activist who has a reclining wheelchair, and asks for beds to be installed in places she wants to go. That's so inspiring to me. We need beds - so why not have them in places we go? It would make shopping a lot easier, if I could take lying down breaks.
Yes how nice it would be to find beds all over the place where we went! And why not?
People with "invisible illnesses" are not socially useless or uselss in the working world. Many have so much creativity to offer, so long as they can do it on their own terms.

I always take lying down breaks when I do my shopping! I have given up (for the most part and especially in winter) trundling round stores, supermarkets etc. and always do shopping online.

I heard you mention in another thread once @lior that the minimum spend of online grocery shopping was a bit of a nuisance for you. With Tesco, Morrisons, Sainsbury's etc it is usually £40 or you have to pay a charge (£4 I think)
But Asda's minimum spend is £25. Or at least it was last year. And their delivery charges are reasonable.
 

PracticingAcceptance

Senior Member
Messages
1,858
Thanks @Wolfcub , I'll look into Asda :)

Haha you mean you take lying down breaks when shopping, because you're doing it at home online? Lol.

It shouldn't even need to be said that we have something to offer, of course we do. The question of how we can make it happen in our own terms is the tricky bit. As you said, so much of the world is rigid. I worked in start ups and we were very flexible, but because we were low on resources, we couldn't always accommodate people's needs - couldn't live stream everything, or put on a creche, or employ someone with significant communication difficulties in a role that required speedy accurate communication because the team was too small to be able to absorb any challenges that would come with that. We wanted to, and the willingness to grow and learn how to be even more flexible was there.

It was good for me - I could set my own hours. This was when I was still able to work a day or two a week.

What would be great is if companies had the flexibility of start ups, and the resources to be able to accommodate less common needs.
 

StarChild56

Senior Member
Messages
1,405
I'm interested in the social model of disability. Here, someone explains on video how it applies to us as people with chronic illnesses.

From 'Mik's Beginner's Guide to Disability'

Great video, thanks for sharing.