In the 1970s, the Canadian psychiatrist Darold Treffert first referred to his concept of “dying with one’s rights on.” The phrase elegantly captures a common tendency in disability rights discourse, which is to privilege abstract concepts like autonomy over the actual physical reality of personal health and safety.
My ex was the manager of an assisting living home/ flats for adults with severe developmental disabilities and neurological impairments and had to put up with an angry rant or two at job fairs by members of the public who asserted that the customers should just be given their agency and freedom - despite the fact that many were incapable of understanding what would be safe to eat or not, how to cross the road etc.
All this is correct IMO, and tracks with my personal experience. I am the co-guardian of my adult son who has severe autism. We have "plenary", which means the max. The state's training included a video of a woman who lived alone (so perhaps has a lesser legal guardianship status) and met a man on the internet who invited her to California to go live with him. The guardians tried to stop it, they called the cops in to present her with facts about sexual exploitation etc. But she went. According to NM state law, and the concept of "dignity of risk", they couldn't prevent her. The idea of "dignity of risk" makes sense to me in the abstract. I'm "normal" but I do stupid shit, and I have the right to do stupid shit. So why can't they. But in reality. HELL NO! I broke into tears when the video ended with her getting on a Greyhound. I ran and hugged my son. No, he doesn't have agency, and I'll do everything in my power to keep him safe. The way they train us on the meds is ridiculous too. We can't give him meds, because that's illegal. My son has physical ability, but the training videos show clients who literally can't move, and the caregiver does "hand over hand" so that they are supposedly consenting to take the pill. This has been so weird for me as I was a die-hard "One Flew Over the Cuckoos Nest" type, but of course I had no idea. No damn idea. Thank you Freddie!
Exactly, some people are just incapable of not believing something if believing it would make them feel better. That you or someone you love could decend through all the horrors and indignities and agonies or dementia is too horrible to contemplate. So when someone shows up online with some bullshit explaining it all away some people just can’t say no.
As a member of the Libertarian party (IE card carrying), I don't have a problem with this at all, as long as there are procedures in place to prevent the usurpation of autonomy from those who do still have it. As has been pointed out, the people whom this protects cannot protect themselves and thus need the protection of the state. Is there a chance that it could be abused? Sure. But, as in any power, that is always the case.
Being a Libertarian does not mean you are against having any gov't, only that is is very proscribed in what it can do, kept as limited as possible, and seeks to expand liberty, as opposed to curtail it.
Ah...well said. I wasn't exactly trying to be snarky there, more just general curiosity about it. Your reply seems perfectly succinct and reasonable to me, thanks for it!
I both have litigated guardianship matters in a highly restrictive state and have adult disabled children.
There is a huge problem with elder and disabled exploitation, as shown in the Netflix movie, "I care a lot". Unless one has a huge amount of money to litigate, it can be really difficult to protect an exploited family member.
However, there is a huge problem of limited capacity individuals who should be protected but are not, due to bad systems.
If a person lacks capacity there should be someone that looks out for their best interests, and not whatever they want in that moment, which is what many states have recently put into place. "Best interests" can be exploited, but it is better, once a person has been found to lack capacity to act for themselves, than just letting suffer and fail.
Obviously there are and have been abuses in guardianships, but how on earth can anyone believe that a person who thinks he's a machine and needs to set gasoline on fire in his bedroom is capable of making decisions for himself?
As dementia overtook my mother, I had to take over paying the bills and take away the car keys and drive her where she wanted to go. The steps I had to take to get control of the bills was sometimes comical. "Look! She didn't pay the telephone bill for three months and it was shut off. Send it to me to pay. She hides it from me." Many of the customer service people knew exactly what I was talking about because they'd been through the same thing. And with your old people, you don't want to embarrass them by outright saying they're incompetent.
My schizophrenic nephew has now been in assisted living for six months and is doing wonderfully! He was in total lock down for a year and then in a less restricted, but still locked down facility for another three years. He should have been transferred to a place like where he is now a year or two ago, but there aren't anywhere near enough facilities. I'm looking forward to having him come to visit for a week or two. He's always enjoyed family vacations.
He'd probably be dead before turning 40 without locked down mental hospitals. He went in the last time emaciated with permanent scarring from doing stupid things due to his delusions. My niece has done a valiant job creating and keeping the conservatorship to help him.
"My schizophrenic nephew has now been in assisted living for six months and is doing wonderfully! He was in total lock down for a year and then in a less restricted, but still locked down facility for another three years. He should have been transferred to a place like where he is now a year or two ago, but there aren't anywhere near enough facilities. I'm looking forward to having him come to visit for a week or two. He's always enjoyed family vacations."
And there is always the ever-popular case of "he's competent.....but only if and to the extent that he religiously takes his meds."
Guardians and conservators are generally different, I don't know California in particular, but I've done them many times in my state which appears to be typical. A conservatorship is appropriate when a person is unable by reason of any physical, mental, or cognitive condition to receive and evaluate information to manage money. A guardianship is for when a person is incapacitated to such a degree that serious physical injury, illness, or disease is likely to occur because they cannot manage essentials such as food, clothing, shelter and medical care. A conservator is tasked with managing the income and assets of the protectee, whereas a guardian has legal custody over the body of their ward. A guardian is, for example, responsible for deciding where the ward may live (subject to court approval).
**Usually** you seek both of these at the same time, but the powers don't have to be vested in the same person, and you don't necessarily need to get both because the legal standards are different. I had numerous cases where there was no conservator appointed for an incapacitated adult because that adult had no income or assets to be overseen. I've likewise had a few cases where the court appointed a family member to be the guardian but vested conservatorship in the public administrator because the ward wanted to reside at home with a family member guardian but the court had concerns about any family member faithfully executing their fiduciary duty as conservator.
In New Mexico when we applied for plenary guardianship they said that we didn't need to bother with the conservatorship because the guardianship covered it. I'm not sure if that would have been different if he had money- which of course he can't because then he would lose his medicaid- but we do have to report on his financial stuff as part of our guardianship annual reporting. Basically we tell them how we spent his SSI check.
Fuck. This is genuinely terrifying to me as a parent of an autistic child. My kid may or may not need guardianship when he's 18, but what if? What if he needs it? I know a number of parents of autistic young adults who have guardianship and it's so necessary for them.
Also, my cousin who is intellectually disabled fell pray to an abusive "boyfriend" and my aunt could do nothing because she didn't have guardianship. Fortunately she's okay now and the abuser is out of the picture. But for a while it was a nightmare.
We didn't get guardianship for my adult autistic child for certain reasons I won't elaborate here. We do have limited power of attorney for healthcare and the child wouldn't be able to manage care without our help.
In my state, power of attorney works for what we need.
I worry about years from now when we are very old and die. Who is going to put in all the hours needed to keep things ok? I suspect no one.....
I appreciate the way you use a common sense approach to make your arguments on this and most other topics. While I don't always agree with your conclusions (I did on this one) your common sense approach is always informative and conducive to stimulating dialogue. That is why I finally subscribed after reading several of your columns over a multi-year period.
Look, I don’t want it to be impossible to force treatment on people who have lost touch with reality and are living in the subway in filth.
But it’s also true that parents have a hard time giving up control of even fully able children when they become adults.
I remember reading one comment during the Britney Spears debacle from a parent heartbroken that he couldn’t get a conservatorship for his autistic son who worked part time and spent all his money on rock concerts. Difficult as it might be to watch your kid live paycheck to paycheck, it’s not a recent to deny them independence!
I also think of my cousin, a mentally disabled adult who lives independently and within his means. With a great amount of care and love, he has a full life with friends and a girlfriend and a bit of paid work, but I suspect that, with different laws and different parents, he could have been shuttered into a group home and never given the chance.
Someone of a conservative cast of mind has no trouble using the Britney Spears case to make up her mind, if not about the whole set of such cases, at least about Britney Spears. This doesn't require any armchair expertise at all, but allowing other indicators to operate, that are closed off to the left. Indeed, I would go further and suggest that - going off of nothing but common sense and one's own family experience - if this is Britney at forty-whatever, then Britney at 25 must have been hell on wheels, prompting one to afford her parent a little grace.
No need for Britney-watchers to recite the financial sins of the father. He may have done his best given his own limitations.
Some people lack the cognitive ability to take care of themselves. That is a difficult and complicated decision to make. And one that is subject to interpretation. And one that will never NOT be a political football. Because it drags in mental illness, class, gender, and our fundamental assumptions about what "liberty" means. The shadow of Rosemary Kennedy looms long.
Considering the rise of helicopter parenting and mental illness among the youth, I'd expect the number of guardianships to go up in the future. I think that SPD model has a lot of utility; I know one guy in that arrangement, and he's thriving. But it's another "only as good as the quality of the care/carers" arrangement.
Whenever there's a complex issue that I know nothing about, I rely on professional athletes and pop stars to tell me what to think. Whether it's medicine, law, international relations, tax policy, it doesn't matter -- celebrities who have large numbers of followers on social media must be doing something right, so that's who I trust. If the so-called "experts" are so great, why don't they have bigger subscriber counts? Some of them don't even have TikTok or Instagram accounts. LMAO.
And what's with this "that first five minute education" bullshit? I don't have time for that. TL;DR!! What's great about popular influencers is they have the communication skills to get me up to speed on any subject in 30 seconds, regardless of my background or prior knowledge. Like, even though I don't remember any math or science, last week I totally learned everything about theoretical string theory and differential geometry. How cool is that? Then I can use my phone and the Internet to spread my knowledge to the whole world!
My ex was the manager of an assisting living home/ flats for adults with severe developmental disabilities and neurological impairments and had to put up with an angry rant or two at job fairs by members of the public who asserted that the customers should just be given their agency and freedom - despite the fact that many were incapable of understanding what would be safe to eat or not, how to cross the road etc.
Outstanding article with moral clarity. Thank you.
Well said. Thank you for this. I’ll be sharing.
All this is correct IMO, and tracks with my personal experience. I am the co-guardian of my adult son who has severe autism. We have "plenary", which means the max. The state's training included a video of a woman who lived alone (so perhaps has a lesser legal guardianship status) and met a man on the internet who invited her to California to go live with him. The guardians tried to stop it, they called the cops in to present her with facts about sexual exploitation etc. But she went. According to NM state law, and the concept of "dignity of risk", they couldn't prevent her. The idea of "dignity of risk" makes sense to me in the abstract. I'm "normal" but I do stupid shit, and I have the right to do stupid shit. So why can't they. But in reality. HELL NO! I broke into tears when the video ended with her getting on a Greyhound. I ran and hugged my son. No, he doesn't have agency, and I'll do everything in my power to keep him safe. The way they train us on the meds is ridiculous too. We can't give him meds, because that's illegal. My son has physical ability, but the training videos show clients who literally can't move, and the caregiver does "hand over hand" so that they are supposedly consenting to take the pill. This has been so weird for me as I was a die-hard "One Flew Over the Cuckoos Nest" type, but of course I had no idea. No damn idea. Thank you Freddie!
"...I was a die-hard "One Flew Over the Cuckoos Nest" type, but of course I had no idea."
Romanticism is perhaps the ultimate Luxury Belief.
Good that you got wise.
"You can find this stuff on Reddit and on Twitter and on TikTok and all of the other places where bad ideas flourish online." A keeper.
Exactly, some people are just incapable of not believing something if believing it would make them feel better. That you or someone you love could decend through all the horrors and indignities and agonies or dementia is too horrible to contemplate. So when someone shows up online with some bullshit explaining it all away some people just can’t say no.
I'm curious...how would your average card-carrying Libertarian handle all of this?
As a member of the Libertarian party (IE card carrying), I don't have a problem with this at all, as long as there are procedures in place to prevent the usurpation of autonomy from those who do still have it. As has been pointed out, the people whom this protects cannot protect themselves and thus need the protection of the state. Is there a chance that it could be abused? Sure. But, as in any power, that is always the case.
Being a Libertarian does not mean you are against having any gov't, only that is is very proscribed in what it can do, kept as limited as possible, and seeks to expand liberty, as opposed to curtail it.
Ah...well said. I wasn't exactly trying to be snarky there, more just general curiosity about it. Your reply seems perfectly succinct and reasonable to me, thanks for it!
Well, we are often mistaken for being anarchists of some variety or other, so I try to be succinct in my answers.
I both have litigated guardianship matters in a highly restrictive state and have adult disabled children.
There is a huge problem with elder and disabled exploitation, as shown in the Netflix movie, "I care a lot". Unless one has a huge amount of money to litigate, it can be really difficult to protect an exploited family member.
However, there is a huge problem of limited capacity individuals who should be protected but are not, due to bad systems.
If a person lacks capacity there should be someone that looks out for their best interests, and not whatever they want in that moment, which is what many states have recently put into place. "Best interests" can be exploited, but it is better, once a person has been found to lack capacity to act for themselves, than just letting suffer and fail.
Obviously there are and have been abuses in guardianships, but how on earth can anyone believe that a person who thinks he's a machine and needs to set gasoline on fire in his bedroom is capable of making decisions for himself?
As dementia overtook my mother, I had to take over paying the bills and take away the car keys and drive her where she wanted to go. The steps I had to take to get control of the bills was sometimes comical. "Look! She didn't pay the telephone bill for three months and it was shut off. Send it to me to pay. She hides it from me." Many of the customer service people knew exactly what I was talking about because they'd been through the same thing. And with your old people, you don't want to embarrass them by outright saying they're incompetent.
My schizophrenic nephew has now been in assisted living for six months and is doing wonderfully! He was in total lock down for a year and then in a less restricted, but still locked down facility for another three years. He should have been transferred to a place like where he is now a year or two ago, but there aren't anywhere near enough facilities. I'm looking forward to having him come to visit for a week or two. He's always enjoyed family vacations.
He'd probably be dead before turning 40 without locked down mental hospitals. He went in the last time emaciated with permanent scarring from doing stupid things due to his delusions. My niece has done a valiant job creating and keeping the conservatorship to help him.
"My schizophrenic nephew has now been in assisted living for six months and is doing wonderfully! He was in total lock down for a year and then in a less restricted, but still locked down facility for another three years. He should have been transferred to a place like where he is now a year or two ago, but there aren't anywhere near enough facilities. I'm looking forward to having him come to visit for a week or two. He's always enjoyed family vacations."
And there is always the ever-popular case of "he's competent.....but only if and to the extent that he religiously takes his meds."
Guardians and conservators are generally different, I don't know California in particular, but I've done them many times in my state which appears to be typical. A conservatorship is appropriate when a person is unable by reason of any physical, mental, or cognitive condition to receive and evaluate information to manage money. A guardianship is for when a person is incapacitated to such a degree that serious physical injury, illness, or disease is likely to occur because they cannot manage essentials such as food, clothing, shelter and medical care. A conservator is tasked with managing the income and assets of the protectee, whereas a guardian has legal custody over the body of their ward. A guardian is, for example, responsible for deciding where the ward may live (subject to court approval).
**Usually** you seek both of these at the same time, but the powers don't have to be vested in the same person, and you don't necessarily need to get both because the legal standards are different. I had numerous cases where there was no conservator appointed for an incapacitated adult because that adult had no income or assets to be overseen. I've likewise had a few cases where the court appointed a family member to be the guardian but vested conservatorship in the public administrator because the ward wanted to reside at home with a family member guardian but the court had concerns about any family member faithfully executing their fiduciary duty as conservator.
The county guardians in my region of CA were found to be corrupt as any greedy relative. No one to do oversight.
In New Mexico when we applied for plenary guardianship they said that we didn't need to bother with the conservatorship because the guardianship covered it. I'm not sure if that would have been different if he had money- which of course he can't because then he would lose his medicaid- but we do have to report on his financial stuff as part of our guardianship annual reporting. Basically we tell them how we spent his SSI check.
Fuck. This is genuinely terrifying to me as a parent of an autistic child. My kid may or may not need guardianship when he's 18, but what if? What if he needs it? I know a number of parents of autistic young adults who have guardianship and it's so necessary for them.
Also, my cousin who is intellectually disabled fell pray to an abusive "boyfriend" and my aunt could do nothing because she didn't have guardianship. Fortunately she's okay now and the abuser is out of the picture. But for a while it was a nightmare.
I just cannot with these people.
Best of luck.
We didn't get guardianship for my adult autistic child for certain reasons I won't elaborate here. We do have limited power of attorney for healthcare and the child wouldn't be able to manage care without our help.
In my state, power of attorney works for what we need.
I worry about years from now when we are very old and die. Who is going to put in all the hours needed to keep things ok? I suspect no one.....
I hear you. My kid has no siblings so of course I worry about the same things. Best of luck to you all, too.
I remember way back when where I saw a presentation in an Autism Society support group about special needs trusts. You might want to look into that.
I appreciate the way you use a common sense approach to make your arguments on this and most other topics. While I don't always agree with your conclusions (I did on this one) your common sense approach is always informative and conducive to stimulating dialogue. That is why I finally subscribed after reading several of your columns over a multi-year period.
Look, I don’t want it to be impossible to force treatment on people who have lost touch with reality and are living in the subway in filth.
But it’s also true that parents have a hard time giving up control of even fully able children when they become adults.
I remember reading one comment during the Britney Spears debacle from a parent heartbroken that he couldn’t get a conservatorship for his autistic son who worked part time and spent all his money on rock concerts. Difficult as it might be to watch your kid live paycheck to paycheck, it’s not a recent to deny them independence!
I also think of my cousin, a mentally disabled adult who lives independently and within his means. With a great amount of care and love, he has a full life with friends and a girlfriend and a bit of paid work, but I suspect that, with different laws and different parents, he could have been shuttered into a group home and never given the chance.
Someone of a conservative cast of mind has no trouble using the Britney Spears case to make up her mind, if not about the whole set of such cases, at least about Britney Spears. This doesn't require any armchair expertise at all, but allowing other indicators to operate, that are closed off to the left. Indeed, I would go further and suggest that - going off of nothing but common sense and one's own family experience - if this is Britney at forty-whatever, then Britney at 25 must have been hell on wheels, prompting one to afford her parent a little grace.
No need for Britney-watchers to recite the financial sins of the father. He may have done his best given his own limitations.
Some people lack the cognitive ability to take care of themselves. That is a difficult and complicated decision to make. And one that is subject to interpretation. And one that will never NOT be a political football. Because it drags in mental illness, class, gender, and our fundamental assumptions about what "liberty" means. The shadow of Rosemary Kennedy looms long.
Considering the rise of helicopter parenting and mental illness among the youth, I'd expect the number of guardianships to go up in the future. I think that SPD model has a lot of utility; I know one guy in that arrangement, and he's thriving. But it's another "only as good as the quality of the care/carers" arrangement.
Whenever there's a complex issue that I know nothing about, I rely on professional athletes and pop stars to tell me what to think. Whether it's medicine, law, international relations, tax policy, it doesn't matter -- celebrities who have large numbers of followers on social media must be doing something right, so that's who I trust. If the so-called "experts" are so great, why don't they have bigger subscriber counts? Some of them don't even have TikTok or Instagram accounts. LMAO.
And what's with this "that first five minute education" bullshit? I don't have time for that. TL;DR!! What's great about popular influencers is they have the communication skills to get me up to speed on any subject in 30 seconds, regardless of my background or prior knowledge. Like, even though I don't remember any math or science, last week I totally learned everything about theoretical string theory and differential geometry. How cool is that? Then I can use my phone and the Internet to spread my knowledge to the whole world!