It's been a little while since I made a post. I've been having health problems (as always), there's a global pandemic, and also I moved into a new house and the basement kept flooding and also (surprise bonus stressor!) one of my pets had a medical emergency and it turns out he has both pancreatic and adrenal tumors.
I actually wrote an entire post a few weeks ago that was pretty cute - it was all about how having a chronic illness and trying to deal with regular problems, like your basement flooding or your pet needing to go the emergency vet, makes everything extra-difficult. There was a fun metaphor about how my shitty roommate (a personification of my chronic illnesses, for you uninitiated) keeps changing the difficulty setting of the "video game" of my life to "hard mode" on me, and there was a nice uplifting message at the end about how you get more experience points in hard mode. Or something like that. Fuckin'... I dunno. I kinda stopped caring about that post. Every time I sat down to illustrate it, I just couldn't do it and would go clean the bathrooms or cook a nice meal or just stare at the ceiling or whatever. Because George Floyd got murdered by the police. And then protests got met with even more police brutality. And in a time when people of color (especially black people) can't fucking safely exist in my country I feel like a fucking tool for making some friendly, uplifting, rose-fucking-tinted-glasses illustrated blog post about how carrying boxes out of my basement makes me limp for a little while. Astute readers would know from looking at my self-illustrations that I'm pretty goddamn white. Not only am I white, I'm blonde! And not fat! And most of the time, my disability is invisible! And, not to toot my own horn, I'm not bad to look at. I'm cisgender, well-educated, fluent in English, appropriately (though punk-ly) groomed and dressed, not poor, married to a super hot cis-male engineer, and on and on - basically, aside from having a body that is just trash and some trauma in my past, I've been dealt a decent hand and have a lot of privilege. However, like all the Cool White People (TM) feel the need to profess, I'd love to add: I'm not completely clueless about police brutality and systemic racism! I've got a sign that says "Be Anti-Racist and Value Black Lives" in front of my house. I've donated to bail funds. I've read books about racism. And yet... the privileged world I live in leaves me still clueless enough that, when watching the recent Last Week Tonight episode about police brutality, a quickly-mentioned statistic from a 2019 article in the journal "Proceedings of the National Academy of Sciences of the United States of America" profoundly surprised me: in the United States, "over the life course, about 1 in every 1,000 black men can expect to be killed by police." Fuck. Look, one of the main reasons I started this blog (other than my therapist telling me to) and why I'm so outspoken about having an invisible disability is because I want people to realize that invisible illness isn't that rare, and that people with disabilities are just regular people. I think that I am, for the most part, a likeable person that lots of middle and upper class privileged and powerful people find it easy to relate to. I want them to know that I'm great and likeable, and that I have a chronic illness, that I have a disability, that I have Ehlers-Danlos Syndrome and realize, on some level, that people with disabilities are all around them and should be given the benefit of the doubt. A lot of the time, people are curious and want to ask me questions about Ehlers-Danlos Syndrome, which I'm always happy to answer. One frequent question I get is, "how common is EDS?", so I've always got the statistic at the tip of my tongue: about 1 in every 5,000 people have EDS (if you include all the sub-types) according to the U.S. National Library of Medicine. Usually, people respond by saying that 1 in 5,000 isn't really that rare, and I agree with them! I certainly feel like people with Ehlers-Danlos Syndrome are everywhere - celebrities like Sia and Jameela Jamil have EDS, I've got loads of friends online with EDS, and after I started publishing this blog, I had people I already knew reach out to me and tell me they have EDS too! So, if EDS is everywhere and touches so many lives, and "everywhere" is this instance is 1 in 5,000 people, and 1 in 1,000 black men in America are likely to be killed by the police... holy shit. Holy Shit. Holy SHIT. Look, if you've ever read my blog and felt any compassion for me, I need you to take some of that compassion and funnel it towards black Americans. Because here's the thing - your compassion for me is wonderful, and I'm so grateful, and it makes my heart grow three sizes when someone tells me they're thinking about me, or praying for me, or were moved by my words - but I gotta be honest, besides making sure that I'm getting the help I need from my doctors/physical therapists/etc and that I have enough financial support to not work full-time, there's kinda fuck-all that anyone can do to help. But there are LOTS of things that can be done to change the systemic racism that is killing black people. Short of me not being born, there's nothing that currently exists that could have prevented my EDS. There are a lot of things that could have prevented George Floyd's death. I would like to see murder at the hands of the police be rarer than my "rare" disease.
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In a choice that is perhaps a bit too on-the-nose for the current coronavirus pandemic, I recently read the book Blindness by José Saramago. In the story, there is a communicable epidemic of blindness (name drop!) that suddenly affects almost everyone in society. The government tries to control the epidemic by locking everyone who becomes blind in a quarantine and offers those in quarantine very little support - basically, they are waiting for them to die. Spoiler alert: it doesn't work, and society crumbles. Disclaimer: I'd like to formally recommend that you not actually read Blindness by José Saramago at the present time. Ionno - the back of the edition that I have says that it's a "powerful portrayal of man's worst appetites and weaknesses - and man's ultimately exhilarating spirit", but I found it pretty heavy on the "worst appetites and weaknesses" and pretty light on the "ultimately exhilarating spirit". In the current climate, out of respect for your probably-already-frayed nerves, I'd recommend something more like this (talk about exhilarating spirit!). While locked in quarantine, the building the newly-blind people are all being held in is eventually taken over by a group of also newly-blind thugs who steal all the food, murder, rape, and basically are the worst. The group of thugs have a superpower - they have a member of their group who did not suddenly go blind due to the mysterious communicable illness, but instead has been blind for years. From page 146 of the book: "So there was a normal blind person amongst these blind delinquents, a blind person just like all those people who were once referred to as being blind... They were certainly lucky, not only had they won a clerk in the raffle, they could also use him as a guide, a blind person with experience as a blind person is something else, he's worth his weight in gold." Obviously, this made me think of the 2012 superhero film "The Dark Knight Rises", starring Tom Hardy as the Batman villain Bane. In this beloved classic piece of cinema, as Batman tries and fails to do his "hide in the shadows" routine, Bane says, "you think darkness is your ally? You merely adopted the dark. I was born in it. Molded by it. I didn't see the light until I was already a man. By then, it was nothing to me but blinding. The shadows betray you because they belong to me." It's basically a mic drop moment, but actually it's a grab-Batman-by-the-throat-and-throw-him-to-the-ground moment. As I think about blindness as a superpower and Bane being born into darkness, I'm also seeing a lot of able-bodied folks on social media struggle with social distancing, because they are finding working from home challenging and finding themselves incredibly isolated and lonely for the people, places, and events they care about - this, of course, isn't addressing people who are struggling due to loss of work, who have an incredibly heavy weight of additional stressors piled upon them. I'm also seeing some people with disabilities being pissed that now that there's a pandemic, able-bodied people are suddenly being given work from home options and opportunities to socialize remotely that would've been life-changing for them. As you know if you've been following this blog, I've been having a pretty crap year. I haven't worked since the end of September due to my chronic pain and other symptoms, and for years now I've been cancelling and limiting what sorts of activities I can do because of my chronic illnesses. I, like other people with disabilities, am a little pissed at how quickly everyone is boarding the work-from-home-and-socialize-remotely train - it feels like, with a little bit of effort, all the able-bodied people could have been extending me these courtesies all along. Of course, I am also frightened - I don't want myself or the people I care about to get sick(er). Mostly though, I've been amazed by how little my life has changed due to the shelter-in-place order in effect in my state. My symptoms mean I hardly can go anywhere or see people anyways - the biggest change to my schedule is that now all my doctor's appointments are through telehealth. I've actually been selfishly delighted by the stay-at-home order. Bands have been live streaming awesome concerts I definitely couldn't have otherwise seen! Museums that I couldn't have otherwise visited are posting video tours! My husband is home with me all weekend instead of partying with his friends! My friends are calling me, and posting in baking groups with me, and remotely playing video games with me! And now I realize... I am the already-blind man. I am Bane. At the end of Blindness, everyone struck by the mysterious blindness-plague suddenly gets their vision back, and the blind people with experience as blind people go back to being regular blind people. At the end of The Dark Knight Rises, Bane is killed and Batman drinks wine with the leading lady in Italy. At the end of this pandemic, I imagine that for the most part, the rest of the world will go back to only socializing in ways that are, frankly, physically daunting and thinking people who work from home are lazy.
But maybe, at the end of this, you could go ahead and visit your friend who has a disability at their home. It's hard for them to leave, and (as you'll know by then) it gets lonely. Normally this blog features (hopefully) humorous drawings, stories, and perspectives regarding my experiences living with a chronic illness. However, I'm breaking from tradition today with a call to action that I think has the potential to work very well to help slow the spread of coronavirus, and also to help lots of low-income people. I think slowing the spread of coronavirus will be beneficial to everyone, including people with disabilities, so I've decided that it's okay to break theme. I'm also going to try to keep this post more swear-word-free than usual, in the hopes that it (or at least my plan) get shared. Unless you've been living in a hole, I'm sure you've heard the recommendations that everyone who can should work from home and socially distance themselves in an attempt to slow the spread of the coronavirus. Crucially, these measures won't prevent everyone from getting the coronavirus - most of us are probably going to get it eventually. These measures are important because it will slow the rate of the virus's spread, and will allow hospitals and healthcare providers to not be overwhelmed. Following these measures will dramatically reduce the death toll (here's an article that, in my opinion, breaks this down in an easy-to-understand way). I've also seen a fair number of posts of social media that are addressing that directives to try to stay home and socially isolate are difficult/impossible for low-income people (here's an example), and that often only upper-class people can do things like this. These posts are making an important point - in the USA, there is no guaranteed paid time off for illness, and just about all workers in the service industry will not get paid and risk losing their jobs if they don't work when they're ill. Since so many people in America live paycheck-to-paycheck (according to a 2019 survey conducted by Charles Schwab, that number is 59%), this is terrifying. If these people contract coronavirus, they will either lose money they desperately need, or they will continue going to work and spread the virus. It's my opinion that now would be the time for government to step in and find a way to guarantee that employees who are sick or who are non-essential to a functioning society practice social distancing. However, we're not there yet - the quick passage of a paid sick leave bill was blocked because the funding for sick leave was expected to come from employers, and the Sen. Lamar Alexander (the senator who blocked the bill) believed that the government should fund this sick leave. So, while we're waiting for a better solution, what can everyday people like you and me do, other than the obvious things like wash our hands and socially distance ourselves as much as possible? Well, if you're reading this blog post, you probably have access to the internet. And if you have access to the internet and sometimes buy things, I've got an idea - I think we should vote with our dollars (and I don't mean by donating to Bernie Sanders's campaign, though please also do that). My plan is based on one surprising fact I learned in my five-ish years working for for-profit corporations: these corporations really care about your complaints and about what you write in those customer surveys. They care A LOT. I have been in meetings where the contents of one negative review are discussed by highly-paid professionals for over 45 minutes. I worked for one company where a customer service representative getting 4 star reviews instead of 5 star reviews was grounds for termination. They care that much, folks, which seems insane to me, but the fact is that our messages, sent directly to these corporations, are one of the best ways the corporations have to learn about how we choose to spend our money. And they want us to spend our money on their products and services. Oh, do they ever want that, so, so very muchly. So here's what I've been doing:
Here's a sample email I sent: Obviously me doing this by myself won't make much of a difference. But if we could get lots of people contacting lots of corporations, encouraging them to make the right choice, I think we could actually make a difference and make corporations realize that there is real economic value in giving their employees paid sick leave. Come with me on this magical *swear word redacted* journey. UPDATE March 14, 2020: I got a response from eShakti's CEO promising that all employees had paid sick leave! Success! If you need a new dress or skirt, I know who you should order it from!
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Grace Daly
I'm young, hot, and have multiple chronic illnesses. Come with me on this magical fucking journey. Archives
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