“But you just got up”. They don’t realise sometimes it is the GETTING up that does you in. We have the hang of it now! I had a good 20 years where that was pretty much how it was. For the first ten I got up anyway, because with CP you get used to pushing HARD, for the next five I couldn’t and now I mix and match rest and pushing based on a which it requires and b) whether I can be bothered to push myself just to fulfil the expectation that that’s what disabled people DO and still get no brownie points because, “You’re not that disabled”. Someone in the USA with CP summed that one up when he said, “As if my actual lived experience is trumped by how YOU see ME!” I borrowed a phrase from a bright novelist and adapted, “He liked the army” “And how did the army like HIM?” for those times when someone wants to deny you access to a bus, hide the fact that they WERE shouting at you to make their mates laugh or just plain invalidating you by saying, “I’ve worked with disabled people” (so I know all about it/know more than you/don’t think you need this help) Someone tells me they’ve ‘worked with’ disabled people these days, I generally say, “And how did THEY like YOU?” Sometimes it’s a misguided, ‘everything I know about disability on a postcard cos I’m nervous’ sort of tic, which people are trying to show they are ‘with’ your information and have up to date knowledge but its crass because we have our own real lives to live not a load of stereotypes.
Feminists, Black and ethnic minorities and the queer community get a lot of this too but have learnt to discuss this and fight it in ways and in articles that show it is a social pattern that people make that mistake rather than accepting that it is OK for them to be treated that way, not something which is FACT. We are so isolated as disabled people with so few people who know these truths and so many pressures to conform to what the well /normal/powerful want us to be that we forget that as my friend Inga would say, “This is my truth”. We actually need to say, “I don’t need to ‘prove’ my disability to you, I AM it!” otherwise we’re giving them that power of being the person we defer to but it IS hard to do when you are the only ill person in the room and there is a long history of ‘what people think they know’ going on.
Whether we were born disabled or got unlucky later we grew up with the ‘normal person’s guide to how it is’ all round us. WE grew up thinking others knew best unless we were really really lucky and had parents who gave us the power to work stuff out ourselves rather than trying to make us the same as everyone else. I expect that’s they same for everyone but it’s particularly difficult if at some point you have to deal with the basic fact that it IS different for you!
I’m trying hard to avoid parallels because my social/political reading has shown that doesn’t help anyone because all the social identities even the ones where we have Welsh and Disabled or Disabled and bi have different issues even if there are parallels in how we get treated. The tricky bit is getting the word out there so we all have the confidence to change the game even I we get called a ‘chippy crip’ as lots did in the 80s for protesting.
I once had the opportunity to call out a middle aged woman who was trying to give a young friend advice for life. I’ve had a few of those conversations and even at 35 people would still try to ‘guide’me who had no knowledge of the thing itself at all. I would never have had the courage if it had been me it was all aimed at (trained to accept it!) But she got the spiel! “Look, she can do it how she likes. She’s got epilepsy AND autism and ….the talent to make a success of either the writing OR knocking herself out trying to be whatever everyone else wants her to be. Don’t tell he she ‘can do anything she thinks she can because she is disabled’ ANYONE can do that but only disabled people get EXPECTED to! Don’t tell her she can do ‘whatever’ AND _has_ to ‘get a proper job’ before she can be a writer. If she wants to be a WRITER she can do THAT. That’s the point. What SHE thinks she can, not what YOU think she should. Don’t tell her that YOU know because your arthritis put you in a chair at 56. She’s 16, she’s got a talent that the next seizure could snatch away and ‘tomorrow’ is too late believe me, I fell for that one and I don’t want to see the next generation pushed into a breakdown or heartbreak. !”
The trouble is people don’t ask the folk on the ground what it’s really like! There’s a myth going round that’s an extension of what you said about the public who think they can SEE a halo/shiny light over ‘certain’ folk (that was especially bad a while back on the groups due to big politicals stirring) that people born disabled/who use wheelchairs/’those other people’ get all the attention and are ‘top of the hierarchy’. I fit into almost every category you could dream up except terminal: visible disabilities/invisible disabilities ‘born with it’, non wheelchair user/wheelchair user/ chronically ill, mental health, special needs, specific learning disabilities, cognitive issues (had to fill in every section of the ESA50!) EVERY group thinks someone else has won the ‘important people get empathy from the REALLY important people (Joe Public) card! Rather like IDS and his ‘genuine disabled people’ stuff. Result? People being nasty to folk who are terminal/been in a chair five minutes because someone’s been telling ’em that ever chair user feels entitled, thinks they are better, is getting all the haloes! People who get on that bandwaggon, whether it’s Joe Pulblic or the ‘what about us’ brigade never ASK! From a chair perspective you do get a bit more sympathy (but is sympathy what you want?) Everyone gets invalidated for something and actually being cooed over because ‘You’re one of the real ones” is horrible because you wonder what they are saying to your mate with depression/invisible disabilities and you KNOW because you nurse your mate through the ‘you’re not disabled’ misery when some twonk goes for them AND you get it when some twonk gets xray vision as well!
It’s understandable that if people get invalidated by Joe Public and have to hear how ‘there’s other people are worse off’ they’re going to think that those other people really DO get all the sympathy and respect and empathy they so desperately need. because if YOU are not THAT disabled it stands to reason the person who IS gets haloes etc. Unfortunately of course humans are darker than that. Logic. Hah! Logic? Other socially deprived groups/cultures who’ve had access to sociology and whatnot to work out what really goes on when folk talk to them have already discovered that insisting that YOUR problem isn’t important* and that ‘those other problems’ matter or that yours might be self-inflicted is just a convenient smokescreen that insures the attention is OFF the story of the person who has a tale to tell of oppression and injustice and back what a onto the status quo.
*Known as ‘whataboutery’ in the USA.