quixotic chaotic

I’d like to take a moment, as we all are currently, to mourn the loss of astrophysicist Steven Hawking. He passed away in the morning of March 14th, 2018, at the age of 76.

When you live in a community as underrepresented as disabled people are, I suppose you could say the upside is that you don’t have to write many obituaries for public figures. However, the ones that you do have to write hit you kind of hard. For many people around the world, Hawking was not only the greatest scientific theorist since Einstein, but also the most widely recognizable wheelchair user in modern history. His lifelong issues with ALS were difficult and they were visible, which made the reality of his disability prominent in ways that challenged social norms. He could not be infantilized, because he was a grown man with children and a complex romantic history. He could not be spoken for because he maintained a voice of his own, and he couldn’t be ignored because to do so was to silence the thoughts of a scientific genius.

Steven Hawking was the greatest proof that a disabled person’s equipment was a part of them; after a complication damaged his vocal chords, he famously bought up the rights to a computer voice he often used in order to make it uniquely his. Steven used it in public appearances and in some cases, he even did his own voice acting with it, until the computerized voice was more publicly recognized than his previously strained voice.

He was, in many aspects, a disabled superstar, and reached larger realms of visibility than anyone previously thought possible. Very few people can be as intellectual as a groundbreaking physicist, but in many other ways all disabled people were just like him. Rest in Peace, Dr. Hawking.

I think in light of Stephen Hawking passing, I would like to remind everyone that ALS is a horrible tragic disease. Watching my best friend suffer from it has no joke been the single worst miserable thing. Ever. ALS had it’s 15 minutes of fame after the ice bucket challenge but I would really really encourage people to still raise awareness towards ALS and donate if it’s within their means. Stephen Hawking surviving so long and being able to continue to even just interact with others is in thanks to equipment and resources many ALS patients just don’t have. If you really loved Stephen Hawking please consider donating to the ALS Association or participating in an ALS walk/fundraising event! 

ALS Association website

Yeah congrats. (Still sick and tired of actors winning statues for playing roles of people with a dissability. )

Let’s get something straight: Stephen Hawking has chronic illness. He is disabled BY his chronic illness. People who are chronically ill are often too sick to work, let alone able to put in the long hours to act in a movie. A disabled actor who isn’t chronically ill playing a chronically ill character would not be any better than an able-bodied actor playing that character. Calling for just any disabled actors to play ill characters is like calling for Hispanic actors to play black characters: they’re two different demographics & two completely different experiences. So since it’s NOT POSSIBLE for the vast majority of chronically ill people to actually represent ourselves through acting or writing or any other intensive projects, I am perfectly happy for the best actor, whatever their bodily condition, to represent me & people like me, and I’d personally like to just be able to celebrate the fact of chronic illness being represented at all without hearing the larger disability community pitch a fit over it every time.

ALSO this movie is specifically about someone with a PROGRESSIVE chronic illness, and follows that progression from when he’s just starting to be symptomatic and is basically able-bodied through to when he is disabled by his illness, so, ONCE AGAIN, no, any disabled actor could not play him, a wheelchair-bound actor could not play him, because that gradual decline from abled to disabled is a HUGE part of the chronic illness & especially chronic progressive illness experience and I am so fucking happy to see it actually represented in a major movie. But please, by all means, find me a currently-working actor who looks reasonably like Stephen Hawking and has a diagnosed disabling chronic illness and who could have done a better job than this actor. Please. Make my day.

TLDR: STFU, you’re wrong.

Hey, I am just sick of movies about disabled people being used as inspiration porn for the abled people. Do you realise how many actors have won oscars for acting like they were disabled? It is like a really good acting move to take these sort of movies on, just so you get a decent shot at an oscar.

I am sure they could not have used an actual disabled actor, how much I actually would want that. But my comment was more inspired by me being angry at the oscar choosing commitee.

Would it be better if playing a disabled character was a career-killing move? If no actors, writers, directors, producers, etc. would ever consider even touching with a ten foot pole a story about a disabled person? Would you be happy if there were no stories about disabled people, no representation at all, if we were just erased from all media knowledge because no one would see any benefit in depicting our lives? Because, newsflash, making movies is a business, and people generally only make business decisions that they think will benefit them. And then only the truly angelic, altruistic people who don’t care about petty things like awards or being able to pay their bills would embark on the charity project of talking about or representing disabled people. Of course, those people would then be painted as treating the disabled community as nothing more than a pity project, and we would then be stuck in our own little echo chamber with only disabled people aware of disabilities, writing and talking and making movies about ourselves that no one else would ever see or care about or take part in – and of course, that’s only the disabled people who are actually *able* to write or speak or make movies, and if you’re *too* disabled then you’re just shit out of luck & the world will simply never know that you or anyone like you ever existed. Would that make this better for you?

Representation isn’t the same thing as inspiration porn. Depicting the actual struggles of people living with chronic illness isn’t inspiration porn. Allowing abled people the opportunity to gain some understanding of life with disability & illness isn’t inspiration porn. And someone getting an award for doing a good job at that doesn’t deserve to be vilified. They did a good job. They should be rewarded. Eddie Redmayne is an actor. He acts like people whom he actually isn’t for a living. He did a good job in this instance, and he got an award for it. A non-ill disabled actor would not have been better for this role, and an actually seriously ill actor would not have been able to undertake this part. A movie that focused on someone disabled by progressive chronic illness yet didn’t reduce them to nothing more than their disability got lots of attention & awards.

What are you angry about again?

Yeah congrats. (Still sick and tired of actors winning statues for playing roles of people with a dissability. )

Let's get something straight: Stephen Hawking has chronic illness. He is disabled BY his chronic illness. People who are chronically ill are often too sick to work, let alone able to put in the long hours to act in a movie. A disabled actor who isn't chronically ill playing a chronically ill character would not be any better than an able-bodied actor playing that character. Calling for just any disabled actors to play ill characters is like calling for Hispanic actors to play black characters: they're two different demographics & two completely different experiences. So since it's NOT POSSIBLE for the vast majority of chronically ill people to actually represent ourselves through acting or writing or any other intensive projects, I am perfectly happy for the best actor, whatever their bodily condition, to represent me & people like me, and I'd personally like to just be able to celebrate the fact of chronic illness being represented at all without hearing the larger disability community pitch a fit over it every time.

ALSO this movie is specifically about someone with a PROGRESSIVE chronic illness, and follows that progression from when he's just starting to be symptomatic and is basically able-bodied through to when he is disabled by his illness, so, ONCE AGAIN, no, any disabled actor could not play him, a wheelchair-bound actor could not play him, because that gradual decline from abled to disabled is a HUGE part of the chronic illness & especially chronic progressive illness experience and I am so fucking happy to see it actually represented in a major movie. But please, by all means, find me a currently-working actor who looks reasonably like Stephen Hawking and has a diagnosed disabling chronic illness and who could have done a better job than this actor. Please. Make my day.

TLDR: STFU, you're wrong.

THIS MAN HAS ALS, AND HIS ICE BUCKET CHALLENGE WILL MAKE YOU LAUGH. THEN IT’LL MAKE YOU CRY

The video begins humorously as Anthony Carbajal, a photographer, dresses up in a neon bikini top and soaps up a car before being doused with ice water. 

So watch the full video here and laugh out loud at the first half and then get ready to tear up in the second half. 

PLEASE WATCH THE WHOLE THING

if you keep reblogging celebs dumping water all over themselves, even if you’re not, please watch this. please please please watch this.

I almost closed the video, when I saw it took 5 min. cause I thought Yeah the guy in the bikini is funny, but I don’t wanna watch him for that long, but I’m so glad I did! This is without competition the most important ALS video I’ve ever seen

WATCH THE ENTIRE VIDEO!!!

You can skip to the 1:45 mark if you're uncomfortable with/repulsed by/etc. partial nudity or (mildly) erotic dancing… after that is the really important stuff. Please watch.