eladnarra's recent activity
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Comment on VR gaming is reawakening my enthusiasm for games in ~games
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Comment on She wrote to a scientist about her fatigue. It inspired a breakthrough. in ~health
eladnarra LinkMeta comment: the fatigue.chronic tag is incorrect - this is about chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). Chronic fatigue is a symptom seen in many conditions. CFS/ME is a...Meta comment: the fatigue.chronic tag is incorrect - this is about chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). Chronic fatigue is a symptom seen in many conditions. CFS/ME is a specific thing, and it involves post-exertional malaise (PEM)/post-exertional symptom exacerbation (PESE), which is particularly relevant to this study showing prolonged recovery times after exertion.
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Comment on Eight in ten women married to men still take husband’s last name, survey finds in ~life.women
eladnarra Link ParentWe don't want kids, so nope! I wouldn't want to change my name just for that, though, and they probably wouldn't either. So who knows, maybe we'd hyphenate for just the kids, so we'd both have an...We don't want kids, so nope! I wouldn't want to change my name just for that, though, and they probably wouldn't either. So who knows, maybe we'd hyphenate for just the kids, so we'd both have an easy-to-see connection to them.
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Comment on Eight in ten women married to men still take husband’s last name, survey finds in ~life.women
eladnarra LinkI can't imagine why I'd want the bother of changing my last name; my spouse and I both kept ours. I have 2 degrees, a registration of birth abroad, and a naturalization certificate in my name, not...I can't imagine why I'd want the bother of changing my last name; my spouse and I both kept ours. I have 2 degrees, a registration of birth abroad, and a naturalization certificate in my name, not to mention the obvious ones (my birth certificate, ID, passports, SSN, credit cards, and bank accounts). I know that the difficulties of name changes are surmountable (and well worth it in many cases), but if you don't particularly want to change your name why would you take on so much extra work?
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Comment on Does cancer screening actually save lives? in ~health
eladnarra (edited )LinkLooking at just length of life (whether it "saves" lives) is kind of ridiculous to me. Breast cancer, for example, is relatively treatable compared to other cancers. So someone with a later...Looking at just length of life (whether it "saves" lives) is kind of ridiculous to me. Breast cancer, for example, is relatively treatable compared to other cancers. So someone with a later diagnosis may still live as long as someone with an early diagnosis caught by regular mammography. But the quality of life impacts can vary drastically - later diagnoses may require radiation and/or chemotherapy, when very early cases may simply require surgery. Cancer treatments suck to go through, and every additional treatment is another chance for long-term complications.
I am very high risk for breast cancer, so this study doesn't apply to me; I'll be getting MRIs and mammograms every six months until I have a mastectomy. But the reason I plan to get a mastectomy is similar - for me, the question is not so much "if" as "when," so I'd rather do whatever I can do reduce that risk and hopefully avoid the shittier treatments (by choosing surgery ahead of time).
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Comment on Women in Denmark can now take a blood test to identify genetic foetal abnormalities in early pregnancy. But it has raised ethical questions. in ~health
eladnarra Link ParentNah, thanks, I've had enough. You disagree, and nothing I say will change your mind, so why waste the energy?If I may propose a reductio-ad-absurdum thought experiment, is it ethical to break someone's leg, on the basis that they may break their leg in a car crash later?
Nah, thanks, I've had enough. You disagree, and nothing I say will change your mind, so why waste the energy?
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Comment on Women in Denmark can now take a blood test to identify genetic foetal abnormalities in early pregnancy. But it has raised ethical questions. in ~health
eladnarra Link ParentThat's a good point about it not just being abled folks who feel that way, thanks! Honestly, your comment resonates with me in a lot of ways. I don't think disability is a gift, personally. I have...That's a good point about it not just being abled folks who feel that way, thanks! Honestly, your comment resonates with me in a lot of ways.
I'm still of the opinion that choosing to have a disabled child is not a gift to that child.
I don't think disability is a gift, personally. I have multiple disabling illnesses, a mutation that makes me more prone to cancer, and probably a connective tissue order than might be genetic (maybe hEDS, maybe HSD, who knows). And I understand not having a kid because of health issues - I know that with my health I wouldn't be able to handle raising even a perfectly healthy kid, let alone a disabled one.
I just think this issue is a lot more complex than people realize. I didn't even bother getting into the contradictions in how I feel about a cure for my particular disabilities, for example. Or how much of my focus on COVID the last 3 years has involved trying to prevent people becoming ill in the way that I did, while balancing that with the belief that my life is not a tragedy as some people would paint it. Or the impact of internalized ableism on these conversations. Or the fact that the majority of genetics is so fucking complicated we can really only test for a small minority of issues.
Just like... after a huge thread of responses about how obviously this is always the good and moral thing to do, how terrible Deaf parents are for having Deaf kids, how a world where poverty stratifies genetic disease status is actually better than the world we live in - I wanted to provide alternative viewpoints. Even if they're messy, or contradictory, or even a little bit superficial, since I'm hardly a disability studies scholar or disability justice activist.
Anyway, thanks for commenting! I thought it was clear. :)
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Comment on Women in Denmark can now take a blood test to identify genetic foetal abnormalities in early pregnancy. But it has raised ethical questions. in ~health
eladnarra (edited )Link ParentNot really. I did say that I want abortion to be legal, and I don't think it needs to be said that I don't think it should be legal to kill people - so I'm not failing to distinguish between the...I think you're failing to distinguish between aborting a pregnancy and killing a person who has already been born.
Not really. I did say that I want abortion to be legal, and I don't think it needs to be said that I don't think it should be legal to kill people - so I'm not failing to distinguish between the two. I'm saying that deciding you don't want to have a disabled child can sometimes come from the same place as doctors encouraging disabled people to use MAID in Canada or giving people "do not resuscitate orders" without their knowledge. It's a distinct lack of valuing the lives of disabled people, and a solid belief that disability is always bad. Many people can't see any potential value in the life a disabled fetus might live, in the way they do value the potential life of a wanted abled fetus. The disability overrides everything else, despite them often not knowing a thing about what disabled lives are actually like. That is a value judgement about disabled people as a whole.
They/we feel being disabled necessarily causes suffering that would not otherwise be experienced, and that if you have the choice to make a newly created human not disabled, it is ethical to do so. No more than that.
I understand where people are coming from. As a disabled person, who values my life including some of the parts of it influenced by my disability, I disagree that this is an obvious ethical "good." Especially since there is no guarantee that aborting a fetus with a genetic disability will result in a subsequent fetus that never becomes disabled. Disability is a natural part of life. Parts of it are hard, but so are many other parts of life.
Also I never claimed that fetuses have bodily autonomy, so... not sure what to say to that. And your confidence that it is "unambiguously and obviously wrong to kill disabled people and to cure their disabilities without their consent" is... uh... very optimistic? (See the real examples I gave above about people encouraging or enacting the deaths of disabled people. Hell, see the ongoing pandemic that has killed countless disabled people, is still killing us, and is no longer a priority to stop because our lives have less value and are seen as less deserving of protection.)
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Comment on Women in Denmark can now take a blood test to identify genetic foetal abnormalities in early pregnancy. But it has raised ethical questions. in ~health
eladnarra Link ParentThank you - I'm very glad I posted, in that case!Thank you - I'm very glad I posted, in that case!
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Comment on Women in Denmark can now take a blood test to identify genetic foetal abnormalities in early pregnancy. But it has raised ethical questions. in ~health
eladnarra (edited )Link ParentYeah... Honestly, I have so many conflicting feelings about this topic; it feels so complex and nuanced, and it's upsetting to see people simplify that down to "genetic testing is always good,...Yeah... Honestly, I have so many conflicting feelings about this topic; it feels so complex and nuanced, and it's upsetting to see people simplify that down to "genetic testing is always good, because disability is always bad and should be eradicated as much as possible." Eesh.
Here's the thing - as someone with a uterus, I'm staunchly pro-abortion. If someone doesn't want to be pregnant, they shouldn't be forced to stay pregnant; bodily autonomy is the most important factor.
But as a disabled person, I feel uncomfortable when people declare that it is always morally good to abort a fetus with a non-fatal disability (like being deaf). If someone chose to become pregnant and have a child, then their bodily autonomy isn't being threatened by the pregnancy. It's no longer a choice between being pregnant or not being pregnant at that point - it's a choice about what types of fetuses are allowed to be born and become people, which in turn is a value judgement about what lives are worth living (which impacts disabled people already alive). And I'm not sure how many people think deeply enough to realize that their theoretical or scholarly debates affect real people.
Although I guess some people in this thread are pretty open about it - they feel being disabled is always a bad thing, and that whatever a disabled fetus could be is outweighed by whatever suffering it might experience. This post is not for them, because anyone in favor of liberal/voluntary eugenics won't really care about the opinion of a disabled person.
But for people who might be persuaded to think a little more deeply about this, I'll end this rambling post with this: abled people, including medical professionals, consistently rank disabled people's quality of life lower than disabled people do themselves. Abled people often have no clue about what makes a life worth living to disabled people; many disabled folks have stories of people telling them to their face, "if I was like you, I'd have killed myself already." It's usually meant to be a compliment, I think? Saying the disabled person is stronger than them. But those abled people actually have no fucking idea how they would react if they became disabled. Yet they make judgements about what lives are worth living based off their fantasies of never-ending suffering ended only by medical euthanasia.
Edit: in case it wasn't clear, I don't think people should be individually restricted from aborting a fetus with a disability, because any restrictions on abortion lead to suffering. And I'll admit it's possible that if the idea of carrying a fetus with a non-fatal disability to term is upsetting, bodily autonomy could actually still apply. But if that's the case... I just go back to the fact that you can't prevent all disabilities, so having a child is accepting some level of risk that they could be disabled. If that's not something you can accept, that's... Not a good thing.
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Comment on Let's add (and rearrange?) some groups + a few notes about other short-term plans in ~tildes.official
eladnarra Link ParentI get what you mean, but on the other hand there's more to being disabled than accessibility - and disability isn't a bad word. As an example, how would an article on "do not resuscitate" orders...I get what you mean, but on the other hand there's more to being disabled than accessibility - and disability isn't a bad word.
As an example, how would an article on "do not resuscitate" orders being placed on disabled people at the beginning of the pandemic without their knowledge fit into an accessibility group? There's no service or activity being denied - just enaction of ableism and eugenics.
A focus on accessibility specifically has the potential to influence the types of articles shared, which means a lot of important issues could go undiscussed.
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Comment on Let's add (and rearrange?) some groups + a few notes about other short-term plans in ~tildes.official
eladnarra Link ParentFor me it's a third reason - I already get enough difficult replies when I talk about disability in comments; makes me pretty hesitant to make posts about it, which have even higher visibility....Is the lack of disabilities related posts because a lack of interest or a lack of designated space discouraging posting?
For me it's a third reason - I already get enough difficult replies when I talk about disability in comments; makes me pretty hesitant to make posts about it, which have even higher visibility.
Certain types of ableism are pretty socially accepted, which makes it easy for them to slide under the radar of any website's rules, even relatively welcoming sites.
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Comment on Women in Denmark can now take a blood test to identify genetic foetal abnormalities in early pregnancy. But it has raised ethical questions. in ~health
eladnarra LinkI'm going to regret posting this, but hey, Twitter is down so I gotta get in my masochistic posting somewhere... Pure genetics are not the only way you can become disabled, so using genetic...- Exemplary
I'm going to regret posting this, but hey, Twitter is down so I gotta get in my masochistic posting somewhere...
Pure genetics are not the only way you can become disabled, so using genetic testing to rule out disabilities during pregnancy does nothing to guarantee that your kid will be healthy or have the "best possible" quality of life. So like... if you truly cannot ever imagine raising a disabled child, maybe don't have one.
Expanding genetic testing focus from fatal conditions to non-fatal ones turns into a very weird situation where acquired disability rates stay steady, but congenital disability rates decrease. What does the disability community become when it loses the people who grow up disabled? What knowledge and culture is lost?
Disability isn't simply a medical status or a defect. It's complex - it's hardship, but also creativity. It's isolation, but also community. It's shame, but also pride.
People are always going to be disabled, whether it's through genetics, illness, injury, or age. And that's okay - or it would be, if our society focused more on supporting disabled people than on trying to make sure we don't exist at all.
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Comment on Twine is an open-source tool for telling interactive, nonlinear stories in ~creative
eladnarra Link ParentCan you not store variables in Twine? I've seen folks set strings and integers and such. Or does Ink have more specialized variables for money and clothing?Can you not store variables in Twine? I've seen folks set strings and integers and such. Or does Ink have more specialized variables for money and clothing?
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Comment on Long COVID: The impact on language and cognition in ~health
eladnarra Link ParentKeep wearing good masks whenever you can!Keep wearing good masks whenever you can!
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Comment on US Supreme Court strikes down President Biden's student loan forgiveness: Now what? in ~finance
eladnarra Link ParentI'm an immigrant, so I know how it works, thanks! It took 10 years and thousands of dollars for my family to become permanent residents in the US and prove my dad wasn't stealing a job from a more...I'm an immigrant, so I know how it works, thanks! It took 10 years and thousands of dollars for my family to become permanent residents in the US and prove my dad wasn't stealing a job from a more worthy citizen.
Luckily we got green cards before I became disabled and turned into a burden who doesn't deserve freedom of movement. Sucks to be stuck for the rest of my life in a country that doesn't care if I die, but oh well. Not like Canada would be better - there they'd encourage me to die legally with MAID.
Anyway, just providing information, wasn't really looking for someone to tell me to my face they're happy people like me have less rights than healthy people.
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Comment on US Supreme Court strikes down President Biden's student loan forgiveness: Now what? in ~finance
eladnarra Link ParentWhile I disagree, my post was just providing additional info- that there's more to it than having an education and being able to speak English.While I disagree, my post was just providing additional info- that there's more to it than having an education and being able to speak English.
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Comment on Who killed Google Reader - a ten year anniversary retrospective discussion in ~tech
eladnarra Link ParentWhen I moved from Google to a Zoho email, I updated a few of the most important accounts, then simply updated emails when I logged into something new. A bit less overwhelming that way!When I moved from Google to a Zoho email, I updated a few of the most important accounts, then simply updated emails when I logged into something new. A bit less overwhelming that way!
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Comment on US Supreme Court strikes down President Biden's student loan forgiveness: Now what? in ~finance
eladnarra Link ParentAs long as you're not disabled or have disabled family members - Canada did increase its threshold recently, but if you're deemed to likely cost too much you're inadmissable.As long as you're not disabled or have disabled family members - Canada did increase its threshold recently, but if you're deemed to likely cost too much you're inadmissable.
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Comment on Long COVID: The impact on language and cognition in ~health
eladnarra Link ParentI'm so sorry you're dealing with this - it really, really sucks. I can't count how many doctors I saw when I first got sick who implied or stated outright that I "just" had depression. (One...I'm so sorry you're dealing with this - it really, really sucks. I can't count how many doctors I saw when I first got sick who implied or stated outright that I "just" had depression. (One pediatrician saw me one time and suggested I go on antidepressants at age 16, despite the increased risk.) I actually scored mildly for depression when I first got sick, but it was plainly obvious to me that the only questions contributing to that were fatigue related.
my symptoms not get better when I am "active", they do get worse after activity and I also have not stopped doing those things I loved to do because I would have lost interest in them, I stopped doing them because I lack the physical and mental energy to do them, albeit I would love to keep doing them....or rather, when I say "fuck it" I push through and do them anyways, because I fucking want to do them, I will crash with my symptoms getting worse the day after....
So many doctors seem completely unable to understand post-exertional malaise (or post-exertional symptom exacerbation if you prefer). On top of being told it's just depression, I often get told that it's just deconditioning. But if it was just that, I wouldn't be able to push through, and I wouldn't end up with a fever and brain fog the next day. What sedentary person complains of feeling feverish or having trouble with word recall if they decide to walk a couple thousand steps one day instead of a thousand?
I was hoping that the silver lining of long COVID would be the medical profession paying attention to this sort of thing, regardless of cause, but most of them seem hell bent on applying the same dismissiveness to long COVID instead (with the additional argument that it was "lockdowns").
Anyway, sorry for the rant! I hope you're able to find someone who is able to look into your symptoms — ME/CFS specialists aren't common, but patient groups can be a good resource for finding sympathetic doctors.
Walkabout Mini Golf is great fun - fantastical courses, easy cross-platform multiplayer, and enjoyable (in the frustrating way that real-life mini golf can be!). I play this every week with my spouse and brother-in-law and always look forward to it.
VRChat has a lot of cool stuff going on (nightclubs, events, classes, meetups, chat shows), but if you're interested, check out some communities - don't risk public instances, not worth it. (A good recent video introducing how to play VRChat)