I think a lot of people presume that I'm not as sick as I am because I don't fall behind in my work. That's not true. I am just excessively good at overworking and I'm obsessed with working ahead. 1/6
I always have next week's lectures done, I am always on top of grading, I am always saying "well what if I have a week where I'm just out, will this course fall apart?" And no it's not healthy to work like this. 2/6
It means I work every single day, over 40 hours a week, just because I'm always so worried about actually being disabled. Because lots of people embrace my DEI work. 3/6
But I don't trust the same people to protect me if I actually dare to show how symptomatic I am. And I don't trust higher ed to protect me if I fall behind. I see how other profs talk about disabled students. 4/6
I have a decade of worrying that rest or taking time off means I'm unfit or unproductive or incapable of doing the work. None of that is true. I can't change the stigma, I can just make sure my classroom is safe for disabled students and I don't perpetuate the same ideology. 5/6
I'm really tired of wondering how disabled people fit into higher ed. Because I don't get to be disabled in any way that upsets the norms of the academy. So am I really supposed to be here or not? 6/6 #AcademicChatter#DisabilityTwitter
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Non-disabled people in my life don't know how to love me like disabled people do. I'm so thankful for all my disabled friends who know how to provide care, rest, support and love. Disabled love is critically different from my other interactions with the world. 1/4
I really wish non-disabled people could learn to love in the same caring modalities. Love looks like remembering my food intolerances. Love looks like saying "that sucks" when I complain. Love looks like calling to check in and telling me stories. 2/4
Love looks like someone bustling around at home doing everyday things that wanted to call just to be with me across time and space. Love looks like not trying to fix everything and just allowing bad days to be bad. Love looks accepting my need to isolate as much as possible. 3/4
Really bothered by thoughts that this pandemic will be remembered properly in history. That the atrocities will be written about. That the truth will come to light about the lives that were meaninglessly sacrificed. As if that will be meaningful. 1/6
I am a historian of disability. I am one of a handful. There are many people writing medical histories, political histories, economic histories about previous pandemics and injustices like institutionalization. But these are usually not disability histories. 2/6
Disabled people rarely get justice in historical narratives. Their sacrifices are remembered in big statistics and sad conclusions. There are maybe a few case studies we can piece together. But we don't get to reclaim and reconstitute everyone's stories. 3/6
Can we stop using the term "wave" when it comes to COVID? The "wave" never ended we just stopped reporting numbers and the news got bored and people stopped wanting to read about what's actually happening. 1/4
So to appease the masses we just said "it's ok let's just wipe our hands of this and do whatever we want while we still can." That's not how infections work. You don't get to drop all protection measures and say "let's try to party before the next wave comes." 2/4
The next wave comes BECAUSE YOU DROPPED PROTECTIONS. I do not understand the cognitive dissonance that seems to be so rampant. If you keep spreading this virus it mutates and eventually infects people, kills people, disabled people. 3/4
A lot of disability rights orgs and rhetoric center around teaching disabled people how to "advocate for themselves." This is important but it's also dangerous. It gives the message that no one else should be building access, and that it's up to individuals to advocate alone. 1/5
You will have to advocate for yourself. But that doesn't mean you should have to do it in every single space, for every access need. Universal design is supposed to relieve SOME of the pressure of this unrelenting labor. 2/5
You should not have to advocate for yourself at every medical appointment, in every educational space, or in every single workspace. You should not have to advocate for yourself in every meeting, or every interaction with a nondisabled person. 3/5
People are asking "what did you do before the pandemic?" when it comes to securing care as a high risk patient. Well even then I feared for my life in a eugenics driven nation that constantly degrades disabled people and tells them they're worthless. So not much has changed. 1/4
The only difference is that talking about discriminatory health care policies back then generally meant discussing systemic change rather than personal change. So individual people felt less "attacked" because it "wasn't about them. " 2/4
Now that masks rely on a personal choice people are framing disabled people's worries as excessive, narcissistic, and unwarranted. Not wanting to die, or develop more life long chronic health issues, is not selfish. 3/4
Today I'm going to get in an Uber, where my driver no longer needs to wear a mask, and travel an hour round trip to see my allergist. Who has told me I need an in-person visit. And I'm going to explain just what that entails for me, a high risk immunocompromised patient. 1/
I have no idea why I need a 6 mo follow up, other than the fact that I'm on Xolair. My condition hadn't changed, the only change to my meds is that I supplement vit D. The meds are working, and I haven't had any asthma attacks or random outbreaks of urticaria without triggers. 2/
What will I gain from this trip? Who knows. So far I've had a restless night worrying whether this doctor will revoke my access to this lifesaving drug. And I've had a restless night thinking about my potential COVID exposures. 3/