- Joined
- Mar 30, 2021
I cant watch it again, I too ugly cried.Tough watch but palliative care is very much the kind thing to do. Excuse me while I go ugly cry now.
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I cant watch it again, I too ugly cried.Tough watch but palliative care is very much the kind thing to do. Excuse me while I go ugly cry now.
"An extra 1 too love"So yesterday was Down’s Syndrome awareness day. Why is it March 21st, you ask?
Because they have 21 chromosomes
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This just feels a bit shitty and insensitive, that the "awareness" day is picked because of the thing that's causing your disability in the first place, and people dressing up because of the thing that's fucked up.So yesterday was Down’s Syndrome awareness day. Why is it March 21st, you ask?
Because they have 21 chromosomes
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Or like Autism Awareness bullshit which oddly focuses on non-autistic parents/relatives more than anything else.This just feels a bit shitty and insensitive, that the "awareness" day is picked because of the thing that's causing your disability in the first place, and people dressing up because of the thing that's fucked up.
"You have a rare genetic condition caused by a microdeletion? The awareness day is on February 29th because it gets deleted from the calendar!Everyone is going to wear tiny hats because it causes microcephaly!
Haha isn't this so cute? Praise me for being a good parent to my special needs child!
"
All of the "autism awareness" groups on any social media have been completely taken over by non-autistic parents of severely autistic children. I understand how stressful that could be, but maybe take it to a support group specifically for parents of autistic kids?Or like Autism Awareness bullshit which oddly focuses on non-autistic parents/relatives more than anything else.
April is fun if you're an actual, doctor-diagnosed autist.
Eh, I think even with the super low-functioning kids they deserve to be loved and properly cared for, not treated as abominations and exploited by their narc parents (or just straight up murdered by them). Unfortunately the latter is kind of the norm in the non-autistic parent sphere which still largely dominates autism coverage on legacy media.All of the "autism awareness" groups on any social media have been completely taken over by non-autistic parents of severely autistic children. I understand how stressful that could be, but maybe take it to a support group specifically for parents of autistic kids?
Then there's the issue of fakers/self-diagnosed autistics (and occasionally the diagnosed but super high functioning) pushing to move from "autism awareness" to "autism acceptance," because apparently everyone is already aware of autism and now the issue is lack of acceptance.
Maybe this was true a few years ago, but the extreme prevalence of fakers online means there will need to be a new wave of autism awareness campaigning. No, you aren't autistic just because you're awkward and like to fidget. No, those people forcing convulsions while dressed in neon colors are not actually autistic and "stimming". There are genuinely people out there now who believe autism is just a different way of thinking, that it's rarely disabling, that nobody would ever want a cure, etc. Nonverbal and ID/DD autistics still exist, there's just a new lack of awareness because they aren't doing dances on tiktok.
TLDR: The people who least need the awareness are the ones getting the spotlight and I'm MATI about it.
And don't get me started on the Komen Foundation and all that pink crap. I felt that way even beforeAll of the "autism awareness" groups on any social media have been completely taken over by non-autistic parents of severely autistic children. I understand how stressful that could be, but maybe take it to a support group specifically for parents of autistic kids?
Then there's the issue of fakers/self-diagnosed autistics (and occasionally the diagnosed but super high functioning) pushing to move from "autism awareness" to "autism acceptance," because apparently everyone is already aware of autism and now the issue is lack of acceptance.
Maybe this was true a few years ago, but the extreme prevalence of fakers online means there will need to be a new wave of autism awareness campaigning. No, you aren't autistic just because you're awkward and like to fidget. No, those people forcing convulsions while dressed in neon colors are not actually autistic and "stimming". There are genuinely people out there now who believe autism is just a different way of thinking, that it's rarely disabling, that nobody would ever want a cure, etc. Nonverbal and ID/DD autistics still exist, there's just a new lack of awareness because they aren't doing dances on tiktok.
TLDR: The people who least need the awareness are the ones getting the spotlight and I'm MATI about it.
I really hope thats a troll, but they probably are that stupid.
Some interesting stories are included in this AskReddit thread:
Apparently there was a case where a woman snapped and murdered three of her profoundly disabled kids because social services were pressuring the family to extend their lives with surgeries that they didn't agree would contribute to their quality of life.
More here:
"All three children had spinal muscular atrophy type 2, a life-shortening condition that causes severe muscle weakness which can result in problems moving, eating, breathing and swallowing."
https://www.bbc.com/news/uk-england-london-34898895
The guy in the comments of that reddit post claiming to have OI is a male who's mom also has it... hotwheels confirmed?Some interesting stories are included in this AskReddit thread:
Apparently there was a case where a woman snapped and murdered three of her profoundly disabled kids because social services were pressuring the family to extend their lives with surgeries that they didn't agree would contribute to their quality of life.
More here:
"All three children had spinal muscular atrophy type 2, a life-shortening condition that causes severe muscle weakness which can result in problems moving, eating, breathing and swallowing."
https://www.bbc.com/news/uk-england-london-34898895
"Tania's depression was certainly not assisted by the constant pressure placed on the family by some individuals within the medical profession and social services who could not agree with Tania and Gary Clarence's stance of prioritising quality of life for their children and who were not readily willing to submit the children to operations and other interventions that they felt were not appropriate in the circumstance," he added.
He said Mr Clarence was assisting Kingston Borough Council in their serious case review of the case but wanted to make clear that allegations of neglect had been "wholly unfounded".
https://www.bbc.com/news/uk-england-30096820
I have Osteogenesis Imperfecta (OI). When I was a kid I tripped over a sidewalk and looked up at my mom amazed I didn’t break a bone. At the time I averaging several fractures a year. As an adult I have a fracture maybe every seven years or so. We lost count of the correct number of fractures but we estimate I’ve had 45+ fractures severe enough to warrant a trip to the ER or doctor.
I have the mildest form of OI, Type I. At 5’4”, I am short. I have a really good quality of life, though. I’m the happiest person I know. I have
Someone with OI has a fifth-fifty chance of having a child with OI. My mom has OI, and had about 9 fractures. She wasn’t diagnosed until she was a teenager. I have OI, my brother doesn’t.
I have a vasectomy. I could have biological kids born without OI by way of in-vitro fertilization (IVS).
Type III OI is severe. These people are often wheelchair bound and sometimes can’t even be lifted without suffering a fracture. Those who can’t be lifted have a seat they sit on that can be transported back and forth from their bed to their wheelchairs.
Type II OI is the most severe. The fetus usually dies during childbirth, has underdeveloped lungs, and babies that survive childbirth are expected to live for a matter of weeks.
I joined a Facebook group for people with OI, and it turned out to be 90% pro-lifers encouraging women to keep fetuses diagnosed with OI, and discouraging people who have OI from having children through IVS. These fundamentalists tell women who have fetuses diagnosed with Type II that it could be a minsdiagnosises Type III. One fanatic even suggested doctors lie so they can abort more fetuses. The fundamentalists would write that, even if it is Type II it’s best that they let god decide if the baby lives or dies, and they tell the mothers not to risk losing precious hours, days, or weeks with their babies. It’s a hard enough decision. You feel awful for the parents dealing with this situation, going to what they think is a community of people who live with this disease, only to be met by religious lunatics.
I feel about religion the way I do about mediums who pretend to communicate with the dead. A lie is a lie whether it makes us feel better or not. Because these are matters of life and death, pain and suffering, and mercy, it’s an evil lie. I’m sorry, but if there is a god, their’s could be the correct god only if god can be evil.
As someone who has a vasectomy because they have a hereditary disease they refuse to pass on to another human, I’m a little bit suspicious of questions like these being asked so often on this subreddit, because I know the question lures people with horrible beliefs. The question of having a disabled baby or disabled people having babies is complicated. This is a very harsh moral and philosophical question that I think can be discussed by logical adults who arrive at many different conclusions, sometimes extreme conclusions. Pro-lifers, ableists, Nazis, or people who bemoan the burden disabled humans have on taxes, are fundamentally illogical and can get fucked.
Sounds like that was probably the kindest choice short of aborting if it was severe enough to be incompatible with life. No point in pointlessly prolonging the suffering of a dying baby ala Tinslee.There have been cases of children with milder forms of OI being taken from their parents, because of the suspicious broken bones. Those cases may have been due to a spontaneous mutation, IDK.
I also know of a woman who, in the 20-week screen found out that their baby had a very severe form of OI that is incompatible with life. They chose to continue the pregnancy; the baby was born about a month later and lived about an hour, because they requested no extreme measures.![]()
I know in the teaching of the Catholic Church abortion is only allowed if there is an imminent risk of death to the mother, like that in an ectopic pregnancy. However if the fetus is incompatible with life the rule of thumb is to not prolong human suffering, but rather let nature take its course. Baptize the infant and keep it as comfortable as humanly possible until the end. This to me is the most humane course of action and I will never understand fundies who are insistent on keeping suffering children alive who their God has deemed tragically unfit to survive.Sounds like that was probably the kindest choice short of aborting if it was severe enough to be incompatible with life. No point in pointlessly prolonging the suffering of a dying baby ala Tinslee.
That pediatric palliative care Dr doc posted earlier was a very sad, but good watch. In cases where the diagnosis is fatal/terminal, palliative care only really does seem to be the kindest choice.
The teachings of the catholic church should also be irrelevant to people who aren't catholic, and shouldn't be used to determine legal rights.I know in the teaching of the Catholic Church abortion is only allowed if there is an imminent risk of death to the mother, like that in an ectopic pregnancy. However if the fetus is incompatible with life the rule of thumb is to not prolong human suffering, but rather let nature take its course. Baptize the infant and keep it as comfortable as humanly possible until the end. This to me is the most humane course of action and I will never understand fundies who are insistent on keeping suffering children alive who their God has deemed tragically unfit to survive.
It’s not an argument of ‘oh premature babies used to die before incubators’, no, no part of these children’s existence is compatible with future full of thriving. Even grieving people should recognize the fruitless efforts of attempting to prolong the pain.
I just don’t get it.
I’m not discussing legal rights. The United States has a separation of church and state, so that is irrelevant. Many of the women itt are Christians, and I’m comparing different Christian doctrines. One that, for many is reasonable, compared to one that is hypocritical at best.The teachings of the catholic church should also be irrelevant to people who aren't catholic, and shouldn't be used to determine legal rights.
The United States has a separation of church and state