I wonder what it's like to go to the hospital knowing that you'll be listened to, treated as a rational adult, and provided care. Because as a disabled woman I can't trust the system I need to survive. I continue to face eugenics every single day. 1/4
And this pandemic has been a painful and traumatic reminder that there is no real push for change. There is no real push to protect disabled individuals. A year of sheltering had taught me that my regular medical needs will always be placed on the back burner in crisis. 2/4
It's taught me that I'll be blamed for any decline that happens in the span of time when I'm denied care. It's taught me that my quality of life doesn't really matter compared to that of someone who is nondisabled. 3/4
It's taught me that there is no space to grieve outside my disabled community. Because disability issues will flash in headlines and then disappear entirely. It's reminded me that I don't understand non-disabled people anymore. And I'm not sure I want to. 4/4 #DisabilityTwitter

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More from @Nicole_Lee_Sch

13 Feb
I was diagnosed with #EhlersDanlos and #ArnoldChiari in undergrad. The eds dx came the winter of sophomore year, and the Chiari dx the spring of senior year. I would have given anything to have disabled mentors through those years. 1/11
I care about disability representation in higher ed because I had to find my way into claiming a disabled identity. Alone. Because I didn't know what to read or who to reach out to or what to ask for. Representation leads to belonging. 2/11
In undergrad I had wonderful profs, some of whom privately disclosed medical issues, but none of whom were vocal and public about identifying as disabled. I didn't have a professor with mobility devices like I had. 3/11
Read 11 tweets
12 Feb
If academia can't offer financial security, medical care, and benefits, it's not a real career track for disabled academics. I can't afford to move every year, change doctors every year, lose medical treatments every year. I'm not applying to any VAPs or adjunct positions. 1/5
I can't afford to keep neglecting my very real medical needs. I already did that for five years. I'm tired of unpaid labor that leads to dead ends. And I'm really tired of the general assumption that if you want to stay in you'll find a way. 2/5
I won't do it. I'll find something equally fulfilling that won't demand that I dig my own grave. And until we acknowledge that "staying in" and "staying competitive" are wildly ableist we won't have an equitable academy. 3/5
Read 6 tweets
16 Jan
When I was 16 my first job was at McDonald's. Now I'm months away from defending my dissertation for my PhD. I've had many jobs in between - research assistant, archival assistant, editor, etc. The hardest work out of them all? That McDonalds job. 1/5
It was exhausting. The job was thankless. Customers were rude and made ridiculous assumptions about WHY people were working there. I have never run my body so ragged in a job. I have never been spoken down to, asked to do thankless work, or yelled at so much in any other job. 2/5
Increasing the minimum wage to $15 doesn't degrade the decade of education I've done. On the contrary, I deserved a wage that could support me back then as I saved for college. I was just as deserving of survival and social mobility then as I am now. 3/5
Read 5 tweets
12 Jan
A lot of #EDS patients talk about developing high pain tolerance because of our frequent dislocations. I want to take a second to talk about the assumptions embedded in that phrase because it so often minimizes what were coping with. 1/8
I have severe allergies to most meds, I have no stable pain meds, I have bone pain from #MCAs, and I dislocate daily. I'm in a lot of pain all the time. And claiming I have "high tolerance" is a disservice to what I'm actually coping with. 2/8
I've learned not to cry, not to throw a fit, to keep working through the pain, because I've been told I need to my entire life. I grew up with Drs gaslighting my pain. I became a teen with doctors gaslighting my pain. I entered my 20s in the same way. 3/8
Read 8 tweets
11 Sep 20
Just a reminder for anyone teaching #DisabilityStudies, for some students your class is a lifeline. I was so excited for my first fully dedicated class in grad school. To explore my own disabled identity, hear disabled perspectives and talk about community building. 1/6
Instead I got a class where we read novels with poorly portrayed disabled characters written by able bodied people. We had theory debates where classmates discussed the degree to which social barriers lay the foundation for disability having never experienced them. 2/6
Since it was a grad level class, we were treated as equal participants. There were no guidelines about what we said. And while no one used ableist slurs or derogatory language, classmates often referenced ableism in underhanded ways. 3/6
Read 6 tweets
7 Sep 20
I met with a nutritionist last weekend who asked what I do. I told her I was finishing up my PhD and the response was "wow you're so driven to keep doing this despite being so sick." 1/
Nah. I'm not driven. I was raised in a lower middle class family. I started working at 16. I worked 60 hours a week some summers to save money for undergrad. It's not about mental fortitude, it's about survival. 2/
Without a job I can't afford medical care. Some specialists in #EhlersDanlosSyndrome don't even take insurance. So if I end up on SSDI I will lose even more quality of life. I will lose the few moments of stable health I get. 3/
Read 7 tweets

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