'They think disability is almost worse than being dead' - fibromyalgia article on BBC website

https://www.bbc.co.uk/news/uk-england-suffolk-49911276

"I won't let you make me feel bad for the things I cannot do, I am tired of being talked over by people like you."

To watch Tilly Moses perform her folk music on stage, there are no visual clues she's disabled - although the message is there loud and clear in some of her lyrics.

A year ago, Moses was diagnosed with fibromyalgia, a chronic condition that causes pain and fatigue. It often comes after a big shock to the immune system: Moses, who grew up in Stanton, Suffolk, had meningitis when she was 11.

She says her fibromyalgia can leave her so tired she passes out. It also affects her cognitive function and she can be in a lot of pain, and she sometimes has to use a walking stick or a wheelchair.

"When people see me, because I'm young and I'm performing, people assume you can't be those things and be disabled."

More at link

 

Very thought provoking article.

I have also come across the societal concept that if happy and laughing, then not disabled, nor in pain.

Also, if one takes care of their appearance, they are not disabled.

These attitudes act as a warning for pwME and others who apply for disability, as the assessors will share these same views.


People's ideas about disability are all over the map:

I once needed a wheelchair for a very short period of time due to the flu, and feeling very wobbly.

A person encountering me spoke very loudly, slowly, and simply to me, in a friendly, but patronizing manner.

I was not deaf, nor cognitively challenged (this was just pre-ME.)

I just had the flu, but being in a wheelchair, the assumption seemed to be I had multiple disabilities.

 

Thing is, it's all about hope and support. Disability with support and ongoing research trying to solve it once and for all is a completely different reality than being without support, in fact facing hostility all around, and with no significant research trying to solve it.

It's the difference between a short stay in prison and wrongful lifetime imprisonment without possibility of parole. One is worth enduring because you know it will end, that there will be a better life at the end of it. The other is a demoralizing monster, immoral when done strictly out of belief and wilful ignorance.

And this is 100% the fault of medicine itself, specifically of some choosing to behave contrary to their very obligations, choosing to leave people in despair, almost proud of it, and refusing any and all attempts to solve it out of a belief there is nothing to solve.

This is what keeps me going, the certainty that there will be something afterward, despite all the nonsense and sabotaging of genuine efforts, it is inevitable, just a question of how long. But by far, orders of magnitude above, the most demoralizing, despair-inducing, is the BPS model, its ridiculous beliefs about magical psychology and psychosomatics in general. They are precisely offering false hope while destroy any genuine reasons for hope.

For that I think that this approach, this psychosomatic obsession, is the most cowardly act ever perpetrated by humans. I mean the whole of human history and the whole of human behavior. There have been worst acts no doubt, none were as cowardly. In most cowardly acts, there are circumstances, forces at play that justify one's role in perpetuating cruelty.

Here it is entirely of their own free will, aware of the basic facts but rejecting them. It is the most raw, most pathetic display of cowardice imaginable, of not only being in a position to help but even having a legal obligation to, but actively engaging in preventing progress from being made to alleviate massive suffering. Far for being extenuating, the circumstances are the most damning they can possibly get.

It's more cowardly than police officers engaged in organized crime, more cowardly than firefighters who moonlight as arsonists, more cowardly and morally bankrupt than any other human behavior because of the confluence of circumstances and actual legal obligations that are instead turned into the deliberate infliction and sustaining of suffering. And those doing it are utterly clueless about the consequences of what they are doing, having convinced themselves they are doing the opposite. Because in addition to being cowards, they are fools.

 

This really needs to change and the public be made more aware of the spectrum of complexity that makes up disability.