Ukrainian-American. Theater/film/music/book lover. Former arts finance girlie. Left-ish Libertarian-ish. Life on pause due to disabling #LongCOVID.
White Plains, NY
Joined October 2008
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I don’t find symptoms to be a useful way to evaluate what medicine is for. It’s better to thing in systems and hypotheses with these illnesses. The same symptom can be caused by numerous different mechanisms.
I’ve been on high-dose IVIG for 5 months but haven’t done plasmapheresis. IVIG has been helping me substantially.
Olenka Sayko retweeted
My heart goes out to Beth for doing this. I really hope the payback doesn’t last too long. It’s a very sympathetic article and she articulated her points so well 🩵
ALT Beth Dobbin is so determined to raise awareness of the illness that has decimated her life that she is speaking out, despite knowing it could trigger a brutal deterioration in her health. Five years ago, she ran for Great Britain at the Tokyo Olympics. Now, at 32, she spends more than 22 hours a day in bed. "I've done little things like attend a blood test at the doctors and been in bed for months after. So doing this interview, chatting away for 30 minutes, that could have an impact on me in 2027," she says. "But I felt like it was really important to do that to get the message out." She now only gets out of bed to eat and use the bathroom. Dobbin has been diagnosed with ME, or myalgic encephalomyelitis - a chronic, fluctuating disease, causing symptoms such as sleep problems, problems with thinking and memory, pain and severe, persistent fatigue that does not improve with rest, and more.
The Olympic sprinter now bedbound for 22 hours a day bbc.in/3TWaqpx
Olenka Sayko retweeted
Lots is happening in the world of clinical trial reform!
I decided to put together a list - all of this was announced since June - and shared some thoughts:
abundanceandgrowth.org/p/is-…
Olenka Sayko retweeted
In 3 months, I’ll get another major neurosurgery: Craniocervical Fusion, Extradural
Decompression of the LLCT/MTH, Bilateral C1 Tubercle Resection
This procedure will be out-of-state, costly and have a long recovery
Please donate and boost! Ty
gofundme.com/f/help-emily-ge…
Why should those be the only available narratives? A person can be determined and profoundly limited. They can persevere and need accommodations. They can be resilient and unable to overcome particular impairments.
No harm, no foul. I’m really sorry you’re going through such a difficult time. Do you have people around you who can support you through this? Hang in there.
Likewise, celebrating disabled people for never making “excuses” can reinforce the expectation that limitations ought to be overcome rather than accommodated. The distinction is between an individual compliment and the broader social norms that such compliments can reinforce.
For example, praising employees who work through illness doesn’t explicitly criticize those who take sick leave, but a culture that consistently celebrates working while sick can nevertheless stigmatize necessary rest.
I agree that praising one person’s perseverance doesn’t inherently condemn those who can’t persevere to the same degree. But my argument concerns how repeated patterns of praise establish cultural expectations.
I can recognize a grieving person’s loving intentions and respect their relationship with the deceased while questioning the broader implications of describing disability-related limitations as potential “excuses.” Those positions aren’t mutually exclusive.
Yes. My substantive concern would remain the same, regardless of whether the speaker was RJ’s father, friend, or colleague. The relationship might affect how and where I expressed that criticism, but it wouldn’t change the cultural assumptions embedded in the language.
But an individual’s embrace of a resilience narrative doesn’t necessarily make it beneficial when generalized to all disabled people. We can respect his choices, understand the context in which they were made, and still question the broader expectations that shape them.
To be clear, I don’t see this as a repudiation of RJ at all. Disabled people often face impossible choices about how to present themselves, especially in unforgiving industries like entertainment. RJ was entitled to embrace whatever narrative reflected his life & experience.
Disabled folks can embrace a narrative about their own experience while that same narrative creates problematic expectations when generalized to all disabled people. Personal identification with a narrative doesn’t necessarily establish that narrative is universally unproblematic
Anyway, I appreciate you taking the time to engage with me on this, and I’m glad we were able to find some common ground even if we don’t agree on everything. Wishing you all the best! 🖤
Twitter is a microblogging platform with character limits. My opening tweet introduced an argument that I developed and qualified throughout a thread. Critiquing the opening in isolation while ignoring the subsequent analysis is not engaging with the argument in its entirety.
But if a memorial tribute itself perpetuates what I and several of my moots consider a potentially harmful narrative about disability, when is it appropriate for disabled people to challenge it? And who gets to decide?