Because I honestly get the heebiejeebies from these ”nuanced” discussions that are only opening up possibilities that more people, in more circumstances, will be killed, as society declines to recognize their living worth with more “nuance” also. That’s why.
MAID Concerns - How Will Our Politicians Respond?
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Pinga
Room for All
What is the "projected hate" that you see? I see love. Love of self. Love of others.
You hate your future self who is different. i think you must hate the idea of an interdepenent society where we can count on being looked after and feel no shame about it. Loving your future self, not killing her, and valuing an interdependent society, not staunch independence...that is love of self and others.
Pinga
Room for All
@Kimmio , I am wondering if you are still seeing a future self "Pinga" that is not suffering, but, rather being supported and that is the core difference.
Can you imagine a future self "Pinga" that is in terrible suffering -- both pain, and inability to control basic functions, such as swallowing. An animal in a cage, totally unaware of why in that cage, and the only option being drugs which also impact the ability for other organs to function.
We aren't talking the wonderful dementia patients that folks show in the videos or ads.
Can you imagine a future self "Pinga" that is in terrible suffering -- both pain, and inability to control basic functions, such as swallowing. An animal in a cage, totally unaware of why in that cage, and the only option being drugs which also impact the ability for other organs to function.
We aren't talking the wonderful dementia patients that folks show in the videos or ads.
But you don’t even know that’ll happen to you and you’re already convinced there’s never going to be another way to improve your life, so that you don’t need to sign your life away and kill your future self. I hear no positives. Only fears and feelings. The same thing the disability community is accused of when we said MAiD was a problem. Except we were right. You are scared s**tless of disability in yourself, which is actually, in action, hateful towards us. Because you are the mainstream. The law reflects your feelings and fears, not ours. In action, though, it affirms ours. Unfortunately.
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DaisyJane
I probably should be working.
"It’s not reasonable to do it in advance."
I'm curious why you state this. For people who are capable of making pre-determined decisions about QOL I think this very appropriate. We also need to remember that people can, and should be encouraged to, modify their predetermined decisions about QOL as their journey of disability unfolds.
Part of the problem is our unwillingness to have meaningful conversations about life and death. Part of what greatly assisted us during the final days of Matthew's life was that we had spent considerable time considering what our best understanding of Matthew's QOL looked like. This meant that we could have necessary and informed discussions about appropriate interventions and end of life care. For example, we could have considered moving to a trach post extubation. I fully acknowledge that many people with disabilities live full and meaningful lives with a trach. A trach alone is not, nor should be, an indication for end of life discussions. However for my son it was not compatible with QOL and would have likely extended his suffering for a period of time - hence the need for nuance. I worry that some of the MAID conversations vis a vis disability might actually extend suffering for PWDs, particularly those with very profound disabilities like my son. Because of his disability we would be obligated to exhaust all interventions in the name of "fair treatment", even if they would only extend suffering. At times these interventions could become abusive and oppressive.
One of the serious critiques of the disability rights movement is that they speak for people with profound intellectual disabilities in ways that may be inappropriate. People with profound ID have largely been excluded from disability activism because they cannot self-advocate - they are paradoxically too disabled for disability rights discourse, and people with primarily physical disabilities cannot effectively speak to their experiences. And equally problematic is that their caregivers - the people who know their needs and lives best - are equally disqualified because they are too able-bodied (similar to what you did upline with me when you told me that I do not have a disability and was therefore disqualified. Yes, I am able-bodied, but my life has been radically impacted by disability via my son's embodiment). As result, people with profound intellectual disabilities are poorly represented in these discussions, and their needs are overridden by the agendas of people with physical disabilities.
I'm curious why you state this. For people who are capable of making pre-determined decisions about QOL I think this very appropriate. We also need to remember that people can, and should be encouraged to, modify their predetermined decisions about QOL as their journey of disability unfolds.
Part of the problem is our unwillingness to have meaningful conversations about life and death. Part of what greatly assisted us during the final days of Matthew's life was that we had spent considerable time considering what our best understanding of Matthew's QOL looked like. This meant that we could have necessary and informed discussions about appropriate interventions and end of life care. For example, we could have considered moving to a trach post extubation. I fully acknowledge that many people with disabilities live full and meaningful lives with a trach. A trach alone is not, nor should be, an indication for end of life discussions. However for my son it was not compatible with QOL and would have likely extended his suffering for a period of time - hence the need for nuance. I worry that some of the MAID conversations vis a vis disability might actually extend suffering for PWDs, particularly those with very profound disabilities like my son. Because of his disability we would be obligated to exhaust all interventions in the name of "fair treatment", even if they would only extend suffering. At times these interventions could become abusive and oppressive.
One of the serious critiques of the disability rights movement is that they speak for people with profound intellectual disabilities in ways that may be inappropriate. People with profound ID have largely been excluded from disability activism because they cannot self-advocate - they are paradoxically too disabled for disability rights discourse, and people with primarily physical disabilities cannot effectively speak to their experiences. And equally problematic is that their caregivers - the people who know their needs and lives best - are equally disqualified because they are too able-bodied (similar to what you did upline with me when you told me that I do not have a disability and was therefore disqualified. Yes, I am able-bodied, but my life has been radically impacted by disability via my son's embodiment). As result, people with profound intellectual disabilities are poorly represented in these discussions, and their needs are overridden by the agendas of people with physical disabilities.
Pinga
Room for All
@Kimmio -- do you buy insurance? I do. I don't expect a fire in my house, but, I sure want to ensure that I have insurance in case it happens.
Do you do power of attorney or a will? I know that both are recommended for people of my age.
In addition, as part of aging, we look at power of attorney for financial purpose, but, also for personal care. We, as part of our aging, our advised that we should express our wishes with those who love us.
In order to do so, we need to understand what is reasonable, and what can be done -- as well as our wishes.
It doesn't mean that I don't love myself or my future self when I think about these items.
It, to me, means that I truly love myself.
Do you do power of attorney or a will? I know that both are recommended for people of my age.
In addition, as part of aging, we look at power of attorney for financial purpose, but, also for personal care. We, as part of our aging, our advised that we should express our wishes with those who love us.
In order to do so, we need to understand what is reasonable, and what can be done -- as well as our wishes.
It doesn't mean that I don't love myself or my future self when I think about these items.
It, to me, means that I truly love myself.
I resent the term QOL, almost as much as I resent the use of IQ as a key determining the of intelligence. Both are misleading and biased toward a white middle class privileged understanding of quality, and intelligence.
Do I buy insurance? I can barely afford my frickin rent. ...insurance. That’s a luxury unless your work covers it. Mine used to. That was a long time ago. I dont do power of attorney. I don’t trust anyone enough to give them that role. I don’t have a will. I have no assets. Except my iPad. My dad gave it to me. He can have it back if i go first. At this rate I’ll probably be gone in ten years. Not even 60 by then, and my parents will outlive me. They can also have my scooter. I’ve got some clothes. My mom can pick through them. That’s really all. No financial assets. I had some savings years ago - a few thousand - but between my ex and I that’s gone. It’s really s**tty that didn’t work out because being alone will most likely shorten my life, and his. He has disabilities of a different kind, as well.
I’m actually, seriously, counting on society to give a s**t about us. or else I’m dead at least ten years too soon. Most people with disabilities are like me, not like Christopher Reeve. A few have middle class careers they can retire on... but one slip in the fragile support system somewhere, and that can all go down the toilet within months. Weeks. My life has fallen in the toilet more than once. You might wonder why we would want to live, then? It’s called hope. And a belief in interdependence if people ever wake up to it. We know it can improve so we hold out hope, and we push for better. We need an interdependent world. This focus on individualism is for the birds. And appreciating the small stuff. I hope covid has taught that to everybody, a bit more.
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Pinga
Room for All
Kimmio, even if you don't have any assets, you should have the power of attorney and a will. There are items, such as your passwords and filing your last income taxes, and documents that will fall to someone.
So back to the track, i get you don't feel that you want to have a power of attorney, or that you can trust anyone in your circle to give a damn about you, that really sucks.
Do you see that others might have that, and in so doing, they are loving themselves enough to think about their advanced directives and desires.
So back to the track, i get you don't feel that you want to have a power of attorney, or that you can trust anyone in your circle to give a damn about you, that really sucks.
Do you see that others might have that, and in so doing, they are loving themselves enough to think about their advanced directives and desires.
Pinga
Room for All
Note: for my parents, they had two very different advanced directives. My mother was very clear that she was ready to go. She had done the advanced directives years before, and if anything, would likely have gone for MAID if it wasn't for my Dad. SHe had lived in pain for a long time, but, also was so tired. When she got pneumonia, the doctors knew what her directives were and would not deviate, despite my Dad's wishes. We agreed with the doctor.
My father, though, took a long time to get to the point where he did not want every single life-saving measure thrown at him, even the most invasive, though he had serious health complications unrelated to what eventually he died of. The reason for that, was Dad had a serious fear of the pearly gates. He was a literal believer in St. Peter and atoning for his sins. He was terrified of death. Once we were able to do some unpacking of that, his concept of death shifted and so did some of his desires.
My father, though, took a long time to get to the point where he did not want every single life-saving measure thrown at him, even the most invasive, though he had serious health complications unrelated to what eventually he died of. The reason for that, was Dad had a serious fear of the pearly gates. He was a literal believer in St. Peter and atoning for his sins. He was terrified of death. Once we were able to do some unpacking of that, his concept of death shifted and so did some of his desires.
Fear is a fantastic tool in schism ... splitting the intelligence away from the emotional aspect that would care about whether a person is mindful or mindless ...
There are many celebrity illustrations ... thus some of us regress into celibate positions of generating myth and metaphor to amuse whatever can be amused from looking into humanity from out there ...
Dan Goleman wrote extensively on this sense of immaterial dimensions ... mental-emotional realms? Many deny such existence in the shadow of powerful idealism!
There are many celebrity illustrations ... thus some of us regress into celibate positions of generating myth and metaphor to amuse whatever can be amused from looking into humanity from out there ...
Dan Goleman wrote extensively on this sense of immaterial dimensions ... mental-emotional realms? Many deny such existence in the shadow of powerful idealism!
DaisyJane
I probably should be working.
Kimmio. You're being unfair. And you're bullying those with whom you disagree. Pinga asked a reasonable question about advanced directives and you responded by attacking her.
One of the grounds rules of safe space conversations is that you engage ideas, not attack people.
Pinga
Room for All
Kimmio, curious, are we only able to have conversations about items which fit with your world?
Ie, can't talk aobut the weather unless it is what your space is like,
ie can't talk about age unless it is aobut your age
ie can't talk about challenges for housing, unless it mirrors your housing requirements
seriously, trying to understand your expectations regarding dialogue?
Ie, can't talk aobut the weather unless it is what your space is like,
ie can't talk about age unless it is aobut your age
ie can't talk about challenges for housing, unless it mirrors your housing requirements
seriously, trying to understand your expectations regarding dialogue?
My expectations about dialogue are that you check your privilege and don’t be so insensitive to marginalized people and poor people. No our voices are not equal, so grant more consideration in discussion, give us more say for once, hear us first for once, because we never ever get it in life.
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DaisyJane
I probably should be working.
That isn't what she said, that's what you heard. There is a difference.
You seem upset if we acknowledge the challenges in your life and equally upset when we don't. If we fail to fully agree with you there is a sense that you take it a personal attack, and an attack on people with disabilities broadly. You correspondingly attack the person voicing the disagreement. As a result this conversation will never progress.
Read the second two lines @DaisyJane I heard and interpreted that glaring ignorance to privelege just fine. That i should really try to listen and understand people better off.
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Pinga
Room for All
@Kimmio do you feel anyone who is disabled might have assets? or might wish a power of attorney for finances or health?
I said "others", and I am surious if you feel everyone that is disabled fits into your defined category of zero assets, zero chance of anyone that is capable of being their POA.
Also please note that you can put your wishes in writing without a POA.
Here is a quick link to a bit of dialogue aobut that: Who can speak on behalf of seniors with no next of kin?.
I said "others", and I am surious if you feel everyone that is disabled fits into your defined category of zero assets, zero chance of anyone that is capable of being their POA.
Also please note that you can put your wishes in writing without a POA.
Here is a quick link to a bit of dialogue aobut that: Who can speak on behalf of seniors with no next of kin?.
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Bill C7 is about to become law very soon, and you don’t want me to talk about it when it’s far more urgent than discussion of advanced directives. This thread was started as a letter to lawmakers about a woman with a disability, whose doctor suggested MAiD to her mother, I might add. This thread was not started to discuss advanced directives for dementia. This thread was about concern for the safety of people with disabilities.
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