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I couldn’t find any guides online that were quite what I wanted, so I made one. I created them to be viewable on my phone, so these should work on any phone bigger than 5″! Together we can end window switching. Hope this helps someone else

My Synesthesia

Stephen Hawking is one of my heroes, and I don’t use that word lightly. He and I are both disabled scientists. He’s been my inspiration to work hard to try and get to the point where I can be remembered for my contributions to knowledge and not my disabilities. Sadly, my academic life collapsed around me because of horrific people who decided I didn’t deserve a shot specifically because I’m disabled.

I have trouble with words when it comes to things like this. I found a post on Facebook by someone named Celeste Adams and I wanted to share their words here. I think they sum it all up so nicely. The only part I feel needs clarity is that Hawking was British and got healthcare through the NIH, not insurance. He actually published many articles praising universal health care and arguing its importance.

Anyway, here’s Celeste’s comments:

“In light of the death of Stephen Hawking I, as a disabled person, would like to say a few words regarding this event, disability, and the way non-disabled people are reacting to this news:

Professor Stephen Hawking was an upper class physically disabled white male who was one of the most important and renowned scientists of our time. His work changed the way everyone thought about the world and what is beyond and the legacy he left behind will probably go unmatched. Since his passing last night I’ve seen a lot of headlines regarding his death that have gone something like, “Despite his disability, Stephen Hawking accomplished…” or posts where people have said things such as “If Stephen Hawking was able to do it, then you have no excuse to not try!”. There has even been “artwork” circulating of a drawing of his wheelchair in the foreground and, in the background, imagery of the cosmos with a standing, upright, abled version of Hawking’s silhouette in its midst. Now while the respect for Hawking’s work seems to be universal, the respect the majority of you have for him as a disabled person is nonexistent, and headlines and posts like these prove it. As the late disability rights activist Stella Young talked about in her TED Talk “I’m Not Your Inspiration, Thank You Very Much”, the world has been sold a lie that for disabled people the barrier in our lives, the tragedy of being disabled, is our disabilities themselves, and as a result we get praised and rewarded by non-disabled people simply for existing and waking up each morning. This is what she refers to as “Inspiration Porn”, where disabled people are objectified and used as tools so non-disabled people can think to themselves, “Well, at least I don’t have it that bad,” and, “If that person can do it, then maybe I should try a little harder” and as a result feel better about themselves. But the rhetoric that our lives are tragedies and barriers that we have to overcome really is nothing but a dangerous ableist lie. The only “barriers” we face are the social and economic ones that are created, enforced, and preserved, by non-disabled people like YOU. This includes hate crimes, denying us access to healthcare, putting us into poverty when we actually can access healthcare, denying us our right to education, denying us jobs that we are fully qualified for, *legally* paying us less than the minimum wage when we do get a job, designing environments that are inaccessible so we can’t leave our homes or even find a home to begin with, taking our children away from us, killing us off or sterilizing us when we are children, incarcerating and institutionalizing us, and CHOOSING to not report any of this in the media or teach our histories in schools. There’s so much more than what’s in that list that each and every one of us has to deal with, but one of the most harmful things of all is this lie that WE are the problem. That our IDENTITIES as disabled people is the real barrier we have to face. Not ableism. Not your willful ignorance. Not your hate or your biases or judgements or constant global debates on whether people like me should be allowed to live or die. But it’s always easier to blame the disabled person, right?

So what does this have to do with Hawking? A few things. First of all, recognize what you are doing when you separate Hawking and his work from his disability. He actually said once that he probably wouldn’t have been able to do the work he had done if it *wasn’t* for being disabled. Whether you like it or not, Hawking changed the world and he changed the world while being disabled. Recognize the ableism and the objectification you enforce when you say and post things about all the he accomplished “despite” being disabled. None of his work was done in spite of his disability, it was WITH his disability, and no matter how hard you all try you can’t change that, and you shouldn’t want to. Which brings me to my next point… I started this bit of writing off by describing Hawking as an “upper class physically disabled white male” and I did this very intentionally. Because of his class status Hawking was able to get access to and afford the proper medical treatment he needed. He was able to have in-home care, skilled doctors, and all the technological and assistive devices he needed such as a wheelchair and speech synthesizer. Now if he had been poor or even middle class, not even half of his care would’ve been possible. (For context, the market price of my own personal wheelchair is $50,000. Yes that’s four zeros. And mine is pretty standard. This is why insurance is so important.) Additionally, no matter what you class status is, when you bring intersections such as race and gender identity into the equation, life as a disabled person becomes even more difficult because you have a whole other set of biases and forms of discrimination set up against you. There’s a reason that the only famous disabled person most people can name is Stephen Hawking, and that’s almost entirely because he was a rich white man. Now this isn’t me entirely trying to argue that Hawking is only famous because he could afford to be and didn’t have to deal with any other type of discrimination aside from ableism. He was a true genius and that is undeniable. My point here is rather that look at what happens when disabled people have access to basic resources. Look at what happens when we’re not killed off or sterilized as kids. Look at what happens when we have access to healthcare and we can afford it. Look at what happens when we’re allowed to get an eduction. Look at what happens when we can get a job. Look at what happens when our books are published and people listen to us. Look at what happens when we are supported and valued by society. Look at what happens when we’re given the tools and the opportunities to be able to reach for the god dammed stars and people pay attention. If the disabled community can give you Stephen Hawking, one of the most important people to ever live, who else is out there? What other geniuses and incredible talents can we offer if given the chance? And what if those chances extended beyond disabled white men? What if we made sure that disabled people of color, and women, and queer, and trans, and poor folks could get the same opportunities and care and tools and resources as well? What if instead of shaming disability and intersectionality we embraced and supported it? And all you have to do is accept us. All you have to do is be an ally, educate yourselves on disability history and culture and rights, fight with us, help us, listen to us, and support us. All you have to do is stop blaming us for who we are and start embracing who we are.

So I leave you with this photo of Stephen Hawking taken by Annie Leibovitz. Leibovitz noticed that in many photos of Hawking the photographers had tried to keep as much of his wheelchair out of the photo as possible. Thankfully she recognized the harm in this and the importance of embracing his disability, so here he is, wheelchair and all.

Rest in peace Professor Hawking. May you be the first of many crips we get to celebrate in our lifetimes.”

things to do more:

take a journal and camera everywhere I go.

write down lovely words that people said to me, poems, ideas, and quotes that inspire me.

plan fun itineraries for weekends and bucket lists for seasons.

eat fresh fruits.

don’t let my insecurities stop me from enjoying things.

do everything I want to do that takes daily practice, patience and some discomfort.

collect recipes to make.

tell people i love them and compliment what I like about them.

watch classic movies.

hug people tightly.

let myself calm down and relax.

break tasks down so I don’t get overwhelmed.

drink tea or fruit infused water.

put on my favorite perfume, even if i’m not going out.

don’t wait for the perfect day to start a new thing.

make plans with friends and actually follow through.

give myself permission to not be perfect, and remember something is better than nothing.

make my bed in the morning.

tidy my desk and remove things and tabs i don’t use often.

go to inspiring places like gardens, art museums, old cafés, oceans or forests.

make playlists or write to cope with emotions.

take photos of everything i love.

insp.

the thing i love the most about amy santiago—and there’s a lot—is that the she doesn’t care about being mysterious or cool or any of that crap.

like, there’s a lot of superheroes and doctor whos and sherlocks running around on tv these days, and with all of them, it’s like, you have these moments where you find out that the main dudes are just. Inexplicably Good At Everything.

they can take down a bad guy, bake a perfect soufflé, field strip any firearm in under 30 seconds, and dance an award-winning rumba, and it’s fucking intimidating. it’s like the show runners want to drill the idea into your head that They Are Cool and Better Than You, like, yes fine I get it, you know?

but it’s not like that with amy.

amy doesn’t care about being ‘cool,’ so you don’t have to either.

she knows how to lip read? she probably took a course. she can take down a runner in a dress and high heels? she never missed a self defense class. she can fold a perfect table napkin? she watched a DIY video. she knows about wedding insurance? she made a whole. freaking. binder.

and if you want to be like amy? you CAN.

you absolutely can, and it’ll actually make amy so much more amazing, because then you know how much hard work it took for her to be that good in the first place.

and if she knew you wanted to be like her? amy would definitely cry and then she’d help, and that’s why i think she’s wonderful thanks for coming to my TED talk.