Being disabled may put you on the bottom of the vaccine list
ASPartOfMe
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An autistic actor’s take on vaccine hesitancy by Mickey Rowe to AFRO News
This year I have seen a medical system buckling under the weight of skyrocketing cases of a terrifying new illness. Medical facilities are experiencing dire shortages of essential personal protective equipment like masks for their staff members, and therefore we heartbreakingly see healthcare providers contracting and dying from the virus. Medical facilities are also experiencing dire shortages of the medical equipment they need to care for patients stricken by COVID-19, such as ventilators. In these situations where there was not enough necessary medical equipment, and with increasing numbers of nurses and doctors contracting the virus, difficult decisions had to be made as to how the limited available medical care was going to be rationed.
An increasing number of states and medical facilities created triage plans that recommend who should and should not be allocated lifesaving care. People with developmental disabilities like myself discovered with horror that they were at the bottom of the list. I was relieved to know that my non-disabled fiancée and 3 of our children were deemed worthy of lifesaving care. I was simultaneously bearing the crushing weight of finding myself at the bottom of my state’s list, alongside my autistic 5 year old. In this age of COVID, if push came to shove, he may not be allowed to live long enough to achieve his dream of growing up to run his very own robot factory, simply due to his autism spectrum disorder diagnosis.
One example of this was recorded at St. David’s Hospital in Texas as they refused COVID treatment to Michael Hickson because he was disabled. As the doctor spoke, Michael’s wife Melissa Hickson turned on her phone and began recording:
DAVID’S DOCTOR: The issue is, will this help him improve his quality of life? Will this help him improve anything? […] and the answer is no to all of those.
MELISSA HICKSON: What would make you say no to all of those?
DOCTOR: Cause of right now, his quality of life–he doesn’t have much of one.
MELISSA: What do you mean? Because he’s paralyzed […]
DOCTOR: Correct.
MELISSA: Who gets to make that decision whether someone’s quality of life, if they have a disability that their quality of life is not good?
DOCTOR: So it’s not me, I don’t make that decision. However, it’s will it affect his quality of life, will it improve his quality of life and the answer is no.
MELISSA: Why wouldn’t it? Being able to live isn’t improving the quality of life?
DOCTOR: […] His quality of life is different from theirs. They were walking and talking people. And I don’t mean to be frank or abrasive or anything, but at this point, we are going to do what we feel is best for him along with the state and this is what we decided.
Michael Hickson was a father of five. He was starved to death in the hospital.
In the UK both the Care Quality Commission and the National Health Service sent warnings out to doctors after people with developmental disabilities were having blanket do not resuscitate orders placed on them. The memos explained that a developmental disability like autism does not automatically necessitate a do not resuscitate order, and that such decisions being made without input from the patients or their families is an unlawful breach of human rights. It is appalling to me that so many doctors, with their oath to do no harm, thought it was perfectly reasonable to decide to not help patients with developmental disabilities during the COVID pandemic. It reeks of assuming that people like me would not want to be resuscitated anyway, because who would want to live with autism? Society tells us people are better dead than disabled, right? Make disabled people and even the word disability disappear, right? It is one thing for society at large, that may not be well educated on disability or ethics and has no obligation to save anyone’s life, to think that it’s better to be dead than disabled. To want so desperately to make disability disappear so they don’t have to look at it or think about it. But it’s especially sickening when medical professionals, who study for years to have the ability to save lives, also agree that it’s better to be dead than disabled.
We live in a time where hatred, vilification, separation, and us vs. them are held up above love and unity. Compassion and empathy can change the world. We all must learn from each other. There is something everyone can learn from you and you can learn something from everyone else and only together can we unite, bring hope to, be a light for, and heal this world. To condemn someone before you understand them only divides us more. Only makes that divide of misunderstanding greater. Slow down. Listen. Your greatest enemy has something they can teach you, and you have something you can teach them too.
We have hope now as President Biden has committed to vaccinating 100 million people over the next 100 days. This will save the lives of so many disabled folx. However, a 2020 study found that only 50% of Americans currently plan to get a COVID vaccine when it is available.[1] This falls far short of the 70% immunity that epidemiologists say society needs in order to break the pandemic. This isn’t just isolated to America. “Vaccine hesitancy” made the WHO’s 2019 list of 10 major global health threats. Most of those who aren’t planning on getting the COVID vaccine have made this choice due to fears that it will cause autism. While there have been zero credible scientific papers linking vaccines to autism, let’s for a moment just imagine that vaccines did increase your chances of autism. We know that they don’t but let us for a second imagine that they did. My life has not been a death sentence. Being connected to a ventilator while your lungs fill with fluid because of COVID-19 or any other preventable deadly disease IS a death sentence. But my life has been beautiful. I have starred as the lead in the Tony Award Winning plays The Curious Incident of the Dog in the Night-Time and Amadeus. I have traveled the world giving Keynote Speeches on our nation’s largest stages. I have climbed trees. I have fallen in love.
My autism isn’t the hardest thing in my life. A lack of accessibility, acceptance, and kindness are the hardest things in my life.
And one way you can make the world more accessible and accepting of autistic people is by getting a vaccination as soon as you can.
We throw around words such as "ableism" casually these days. While ignorant slights are frustrating and annoying unfortunately we need to be reminded where our priorities should lie.
_________________
“Self Acceptance is a process not a performance”
“You are autistic enough. And you always have been”
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity.
Last edited by ASPartOfMe on 31 Jan 2021, 6:34 am, edited 2 times in total.
I've been kind of feeling this.
My older folks got done through age.
My cousin and aunt are being done through work.
My mum got done through work which is messed up cos she should've been done through disability.
Meanwhile, I have 'nowhere to go'. So it's considered ok for me to be at home...
I kind of don't mind cos nowhere is open (except supermarkets - no thanks) so I genuinely do have nowhere to go. But I hope I don't get forgotten about.
Bear in mind this is all pretty much 'what disability?' dependent. They're attempting to help some of disabled people. My cousin and aunt are being dribbled on all day long by SLD kids who need their teaching. By being vaccinated, they're saving those kids from getting the virus.
Fact is that logically I can stay home. It's just a question of how much of that time I should spend on social media.
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My biggest fear is that it's going to be mandatory and I will be forced to take it. Or excluded from places and events if I don't carry a vaccination certificate or app. Not that I go anywhere really, but I need to be able to buy food and would like to have the option of going places when I feel up to it.
I'm extremely sensitive to medicines, vaccinations, chemicals and all kinds of mildly toxic stuff really. I'm the proverbial canary in the coal mine. I had a flu shot one year and soon after, got the worst flu like symptoms I've ever had. I ended up with pneumonia, in bed for weeks and had to have 2 courses of antibiotics to recover. No more flu shots for me. My immune system seems to do best without interference from toxins and chemicals.
So I'm terrified of what one of these untested new kinds of vaccinations would do to me. Contrary to what this article seems to suggest, I love my life and want to live as long as possible. It wasn't always this way, before I knew I was autistic, my life was a constant struggle, trying to be something I'm not. I'm not scared the vaccination will give me autism, I'm already autistic. It's being autistic which gives me concern about the vaccination, I'm sensitive, it might harm me in ways it wouldn't harm a NT person or a non-sensitive person.
But of course no one should be discriminated against if they want to be vaccinated. Every life has value, maybe not if you are a murderer or genocidal maniac and are still actively harming people. Which brings to mind some of the high profile people pushing these vaccines. But that's another issue. If we only get one chance at life, which many people believe, then we should have equal opportunities to live out that life regardless of it's quality compared with other lives. What gives anyone else the right to decide the value of my life compared with another life? Unless I'm voluntarily hurting others, then I deserve to have my rights removed.
But really, this is horrible. If they need a system to roll out the vaccines, it should be a completely random method, like via a number in your date of birth or alphabetically, or street number.
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My neurodiverse score: 131 of 200
My neurotypical score: 70 of 200
I'm very likely neurodiverse (Aspie)
.... which explains why I've always felt a bit odd.
dragonsanddemons
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I’ve been thinking that even though I’m in an earlier group because I’ve recently had chemotherapy, I don’t think I’m getting the vaccine at least until they’ve opened it up to everyone. Certainly if there are a limited number of vaccines, if there aren’t yet enough to go around, someone who isn’t going to spend much of their life wishing they’d just die already should get it instead of me. And I’ve asked my parents to just let me die instead of having me put on a ventilator if it comes down to that and I’m not in a condition to make the decision, I just can’t see however much more life I have left being worth that.
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Yet in my new wildness and freedom I almost welcome the bitterness of alienage. For although nepenthe has calmed me, I know always that I am an outsider; a stranger in this century and among those who are still men.
-H. P. Lovecraft, "The Outsider"
I wonder if they've studied the efficacy and correct dosage for autistic people. It seems common that people on the spectrum require very small doses, almost baby-sized doses, of medicine. Many of us seem to have adverse reactions to medications, vaccines, and other chemicals.
I'd be curious to know how many autistic people were tested in the drug trials, and what the results were.
I'm still waiting to know if severely immunocompromised people are even allowed the vaccine. My daughter isn't allowed normal flu jabs, but we won't talk to her specialists again for about two months.
The vaccine isn't even available here so we're in no rush.
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goldfish21
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Very interesting article. A situation where it's beneficial to not be professionally diagnosed, I suppose. But yeah, interesting.. was nice to read the wife's perspective questioning who the doctor was to determine a paralyzed man's quality of life as being low. Same for the autistic author.
I'd rate my overall quality of life as pretty damned good. I'm sure some NT's I know are jealous of the time I spend at the beach, riding my motorcycle, kiteboarding, getting laid etc. Not like I have a terrible life not worth staying alive for.
Why should vaccine distribution be random when risks for covid are not?
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What I understand to have come from the phase three trials of three leading candidates (Pfizer-Biontec, Oxford-Astra-Zenneca and Moderna-NIH) is that they showed very good efficacy, even after just the first dose, at stopping people getting so sick that they end up in hospital.
It appears to have formed the basis of the decisions to start with people both at greatest risks of getting so sick they need hospital, and in setting where the risk of one person with those risk factors passing infection onward to other equally at risk people. So where I am, the first doses of the first approved candidate have been over 80 and in care homes (largest group to suffer death in the first outbreak), then work downwards from the highest risk factors to over 80 general, then down to over 75 and looking to over seventy plus clinically vulnerable.
There is not enough data in yet to give a definite answer on how well the immunity from vaccination blocks transmission. There are hunches it will, but as the data showed the candidates blocked getting sick enough to land in hospital, this has been the approach taken, because there is evidence to support it, and reducing people landing in hospital removes one of the biggest risks of death from more things than just covid 19 which is deaths because health services are overloaded and cannot offer the necessary quality o care, or non urgent stuff is postponed and ends up turning into urgent and life threatening.
I've been aware of this for months and it is the thing that freaks me out the most about getting COVID.
I honestly don't care about dying, but if I went into the hospital I don't want someone else to make the decision that I'm useless and have no QOL just because I'm autistic, so I should be allowed to die. I don't have a diagnosis and it still terrifies me.
I understand they have to make decisions like this right now, but I hate that this just reminds me of eugenics. It reminds me of how little a lot of NT people care about us and what happens to us.
goldfish21
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I honestly don't care about dying, but if I went into the hospital I don't want someone else to make the decision that I'm useless and have no QOL just because I'm autistic, so I should be allowed to die. I don't have a diagnosis and it still terrifies me.
I understand they have to make decisions like this right now, but I hate that this just reminds me of eugenics. It reminds me of how little a lot of NT people care about us and what happens to us.
Valid concern, IMO.
Also a bit ironic considering Medical Doctors themselves have told me they think you kind of have to be at least a little ND to make it into & through medical school.. to be hyperfocused on a special interest etc. So it's rather messed up that Doctors would be making decisions like this. Is it because they're very high functioning and undiagnosed? Or are they just enforcing the rules and the decision criteria is made by insurance companies and governments on who lives or dies? Hmm.
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Also a bit ironic considering Medical Doctors themselves have told me they think you kind of have to be at least a little ND to make it into & through medical school.. to be hyperfocused on a special interest etc. So it's rather messed up that Doctors would be making decisions like this. Is it because they're very high functioning and undiagnosed? Or are they just enforcing the rules and the decision criteria is made by insurance companies and governments on who lives or dies? Hmm.
I know that in situations like this these decisions are being made because of a lack of resources and they have to try to make the best use they can of those resources (put them towards people who are more likely to recover, more likely to contribute to society, etc.), and I try to be mindful of that.
Though it's still hard to be empathetic about it when it means that if you were gravely ill and someone had to make the choice of either you or someone else getting proper treatment, the thing that makes you who you are (autism) would make it easy for someone to decide for you to be withheld that treatment, which would ultimately kill you.
I doubt doctors want to make that decision, but it's still disgusting to me. You can be completely happy living as an autistic person and be "successful", but solely being autistic could be enough to make them say you have s**t QOL so you just don't get treatment.
Looks like last year's conversations about and actual rationing of hospital care may now carry over in to rationing the vaccines ...
Here Come the Death Panels
Obamacare didn’t lead to rationing. The mismanagement of the coronavirus will.
By Michelle Goldberg
Opinion Columnist
March 23, 2020
https://www.nytimes.com/2020/03/23/opin ... rtage.html
The Extraordinary Decisions Facing Italian Doctors
There are now simply too many patients for each one of them to receive adequate care.
March 11, 2020
Yascha Mounk
Contributing writer at The Atlantic
https://www.theatlantic.com/ideas/archi ... ed/607807/
The principle they settle upon is utilitarian. “Informed by the principle of maximizing benefits for the largest number,” they suggest that “the allocation criteria need to guarantee that those patients with the highest chance of therapeutic success will retain access to intensive care.”
The authors, who are medical doctors, then deduce a set of concrete recommendations for how to manage these impossible choices, including this: “It may become necessary to establish an age limit for access to intensive care.”
I wonder if there are those who similar to, "There are now simply too many patients for each one of them to receive adequate care."
would say,
"There are now simply too many people for each one of them to receive adequate vaccination"
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goldfish21
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Also a bit ironic considering Medical Doctors themselves have told me they think you kind of have to be at least a little ND to make it into & through medical school.. to be hyperfocused on a special interest etc. So it's rather messed up that Doctors would be making decisions like this. Is it because they're very high functioning and undiagnosed? Or are they just enforcing the rules and the decision criteria is made by insurance companies and governments on who lives or dies? Hmm.
I know that in situations like this these decisions are being made because of a lack of resources and they have to try to make the best use they can of those resources (put them towards people who are more likely to recover, more likely to contribute to society, etc.), and I try to be mindful of that.
Though it's still hard to be empathetic about it when it means that if you were gravely ill and someone had to make the choice of either you or someone else getting proper treatment, the thing that makes you who you are (autism) would make it easy for someone to decide for you to be withheld that treatment, which would ultimately kill you.
I doubt doctors want to make that decision, but it's still disgusting to me. You can be completely happy living as an autistic person and be "successful", but solely being autistic could be enough to make them say you have s**t QOL so you just don't get treatment.
I comprehend that they have to ration care when dealing with a high volume of demand over and above capacity.
What I’m talking about is who makes the decision that autism = on the list of low quality of life people to let die. Not the doctors following the rules and identifying which patients are on the list. The people who make the list and rules in the first place.
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CockneyRebel
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I know this is an unconventional and possibly controversial opinion, but I think that beside healthcare workers and other “front line” workers like gricery store clerks and teachers it should be young people getting vaccinated first, since they’re the ones partying and spreading the virus everywhere. Also they’d be able to get back to in-person school sooner.
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goldfish21
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No.
They will party and spread the virus even more if they have a false sense of security about a vaccination preventing the spread of covid. They don’t yet know if it will stop the spread or if it just makes it asymptomatic vs strong symptoms. That’s why people who get vaccinated still have to wear masks and keep distance so they don’t catch it and spread it without realizing.
The reason it’s going by age from oldest on down is that it affects old people most. May as well protect them from dying or having severe symptoms. Young people typically have way milder cases, so they’re last to get vaccinated.
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