Showing 44 of 44 comments.
Every single person I know had all those things when they got sick.
You misunderstand me. I’m terribly sorry for your bad experiences. But those experiences are your experiences. The attempt to speak for others as if your experiences are their experiences is where I take exception.
I would agree with you about informed consent. Having said that, I haven’t found that to be a problem. When my daughter was unable to understand side effects, etc., they told me, or at least suggested I look it up, not to mention the thousands of words about the medications that come along with them. I’d also agree that treatment that makes you worse shouldn’t be allowed. Again, no experience with that. Involuntary treatment kept my daughter sane and safe.
You’re still saying you know more than someone else does about their own condition. Rather insulting, yes?
I read it. It didn’t apply to me.
That’s fabulous for you. But you’re speaking for everyone based on your experience? If someone tells you they can’t “recover” and need psychiatrists and meds for the rest of their lives, are you saying they aren’t smart enough to know their own health and what they need? How does that make you better than the system you say you disdain?
So a “free society” is supposed to provide you with:
The stable housing necessary to feel safe and reasonably comfortable
The transportation, internet and phone services needed to access employment opportunities, community services and natural supports
The healthy food necessary to nourish minds and bodies;
A decent bed to sleep on
Physical and wellness supports like gym memberships, body work, artistic and creative outlets,
Personal assistance for daily tasks like housekeeping, personal hygiene, or meal preparation when these become overwhelming
Education and training to improve our options
This “free society” is supposed to provide you with these things because you have a mental illness and this is the cure, not the doctors or the medication. Families have requested more help for their family members who had all these things and still got sick. Your current model of care completely leaves out the sickest people.
If you consider being alive, housed, safe, and sane short term, then her benefits are indeed short term. She was very very sick, very very symptomatic with an illness that causes delusions and paranoid thinking. I tried every alternative imaginable, including the Open Dialogue method – even though at the time I didn’t have a name for it. As it turned out, her only alternative was good old fashioned medicine. After believing that she didn’t need the medicine for many years and ending up in the same delusional state, she eventually gained insight. I might add, she’s also never been arrested due to good medical care. And if she dies 25 years earlier than she otherwise might – I’d argue she could have been dead when she was 19 – so however long she lives, she’s already lived 11 years longer than she would have without a psychiatrist and involuntary treatment.
I’m going to repeat – I have never once, not once ever, nor will I ever advocate against alternatives. I simply finding advocating against psychiatry and treatment for those that need it to be beyond cruel and/or misinformed. What I find really ironic is some of the people who advocate against medical care for people like my daughter are the same people/orgs who then advocate for their medical care once incarcerated. Not saying that’s anyone on this site, but it’s a current phenomena that is one of the most ridiculous/inhumane things I have ever seen.
As for Murphy’s bill – near as I can tell, y’all have probably won. The new bill probably won’t pass – or if it does, it will be so watered down as to have no effect on folks like my daughter. Finding your happiness and/or funding in other people’s destruction isn’t anything to be proud of. But I’m sure you’ll celebrate – all the way to the bank.
And by questioning the outcome of her treatment, are you not attempting to speak for her, not even knowing her, and not having any better solutions?
I have had every voluntary solution thrown at me as I attempt t engage in these conversations, and not one of them would have worked when her symptoms were at their most severe. And now, she has no desire to take part in any of those voluntary solutions. She did take WRAP about a year ago. She found it demeaning and an insult to her intelligence. She showed me the material and I completely agreed. It was nothing more than common sense, something that if she were able to access when she was symptomatic, she wouldn’t have had any problems in the first place!!
While I won’t post a laundry list of her symptoms so they too can be picked apart, I will say that compared to how she is when she is symptomatic and how she is when she is not (via medication), she is quite well. Being able to live in reality, enjoy one’s family and leisure activities is a level of recovery that should be applauded by those that promote recovery, rather than decrying as not enough when the person isn’t able to join your bandwagon that everything that was done to get them there was wrong or abusive. I will use your words and say that nobody has the right to “abuse, imprison or poison people in the name of helping them”. In her case, all that happened was a very sick young woman got medical care while she was too sick to know she needed it. She, and all of us who love her, are extremely grateful. And we ask, that the “peer movement” speak only for the actual members in it, not for your peers who have declined to join as their experiences are vastly different from yours.
So am I to understand that the peer movement that Sera refers to in her blog doesn’t attempt to speak for anyone other than the actual folks in it?
See the above post to Sera for an explanation. Better I speak for her than you.
Sera-I am my daughter’s legal guardian and am 100% responsible for accessing care for her as well as decent housing. As I stated earlier, she doesn’t take part in these debates as she finds them of no benefit to her wellness. It took a total of 4 posts by someone kindly and politely disagreeing with, and/or trying to tell her that she is wrong to send her into a panic attack in fear that she would lose the services that I have fought so hard for her to receive, the ones that allow her to retain her sanity. I find the discomfort in speaking with family a rather faulty premise, not to mention a way to marginalize extremely sick folks who have no voice. This is what my original post was about. The “movement” presumes to speak for everyone with a mental illness when it loudly proclaims that involuntary treatment is wrong. Tina Minkowitz is speaking for everyone with a MI by drafting and advocating that the CRPD be adopted, an effort you lauded in a previous post. But if I speak for my daughter–that’s “uncomfortable”??Excuse me?
Sera-I have often opined that we should have two separate entities in the BH system. I have no desire to push a doctor or medication on someone if they don’t need it. And I have run across many people who have convinced me that no matter how desperate their situation appears, they don’t want involuntary care. If I ever thought my daughter was one of those people, I never would have advocated that she get care. So we need an entity that serves those who choose or have to use traditional medicine. I’m also convinced we another entity created by the “movement’ that is rich in whatever services y’all think are important for you. I’ve never had any “argument” against Open Dialogue, talk therapy, peer support, Yoga, or anything else that folks would want. As I stated earlier, my only disagreement is telling me and my family, particularly my daughter, that her needs should be the same as someone else’s. Peers that work in the system in my state have tried to “advise” her and she resented it so badly, she will no longer engage with anyone in the system..or online for that matter…that identifies as having a MI. I have to apologize for my assumptions in my response to you. I have never had anyone in the “movement” even suggest that we could accept the notion that some folks have a brain disease and just might possibly need involuntary treatment. Thanks for that recognition.
Sera, I won’t waste my time telling you about my daughter who was in an unavoidable specific situation and needed to be forced into care, not will I waste your time telling you that the consequence that would have befallen her would have been death without medical intervention since you seem to not understand the reason people tell you these things. They use their family members as examples in an attempt to explain to you that your idea of no force and mental illness is simply distress or some kind of normal human condition that requires no medical attention unless the sufferer specifically requests it simply doesn’t apply to everyone. Other times we use our family members as examples in an attempt to get you to stop all the wonderful words you use to write with and tell us what you would have us do with a sick family member/adult child instead.
I agree that your movement should not be called “peer”. My daughter, who had the condition which every member of the “movement” says doesn’t exist….no insight. When she finally gained insight (I know—tough to do since according to you she always had it), she tried to speak to her supposed peers and tell her story which was a very simple one. She was sick, she was forced to get medical care and she is grateful. Her “peers” that are in the “movement” argued with her and treated her like she had “no insight” into what had gone on in her life, she was too ignorant to understand what had happened and had been manipulated. Rather ironic when this is what the “movement” says psychiatry does. She has been in the behavioral system since 2004, 8 years involuntarily, and she noted that in all that time, no psychiatrist was ever as forceful, rude or mean to her as people in the “peer movement” were to when she tried to raise her hand and tell y’all that there are more voices than just yours that should be listened to.
I see no connection between Michael Brown and the involuntary care my daughter received. The Ray Rice domestic violence story sounded familiar, however. There was a time when if a woman didn’t press charges, the man went free, no charges filed. Then folks decided that the woman could, in a sense, have “no insight” into her terrible situation, and needed the government to step in and file charges when as she was somehow unable to do so on her own. I watched as Ray Rice’s wife told everyone that she wanted to handle the situation between the two of them while domestic abuse advocates flat out ignored her wishes and went after him anyway. Meanwhile, even though there are people like my daughter who would ask you to not speak for her, you do so anyway. There’s something wrong with that.
Well, no. They had a lot of help from the families taking care of the people that you think either don’t need that much help, have been left behind by their supposed “peers’, are incarcerated, homeless or dead. You know, the folks who aren’t well enough to be protesting or posting on Mad in America, the forgotten people that society and you folks would prefer to discard. Sad.
And how about families like this one?
Correction-this should say—“In another post, I WAS asked if my daughter will always be my slave”.
My daughter’s behavior while psychotic is a lot closer to “the unmedicated mental patient running naked through the street brandishing a meat cleaver” than “someone confronting very difficult circumstances, consequently experiencing extreme emotional states and, as a result, acting in ways which bother other people”.
Just as it’s unfair for psychiatry or anyone to assume that someone who isn’t bothering anyone but has thoughts and/or behaviors that others might find strange should have to take medication, particularly if they don’t want to, it’s also unfair for people to assume the reverse, that everyone’s illness is the same as theirs. The notion that everyone can use alternatives is the same paternalistic attitude that you know what’s best for everyone.
My intent is to try to work together to get what everyone needs. It’s clearly futile. No matter how many times I say I’m in favor of all alternatives, that seems to be ignored and I keep getting lectured on how bad involuntary treatment is. In another post I asked if my daughter will always be my slave. How kind. She’s a disabled beautiful adult woman, being called a slave. And people wonder why I won’t expose her to this site.
This is my last post. Y’all keep advocating against my daughter and others like her. Like I said, I think it’s wrong. You don’t have all the answers any more than psychiatry does.
When my daughter was psychotic, she wasn’t able to access any alternatives. She was too delusional. The only thing she was able to do was act on her delusions. When the doctors got her somewhat stable, she wasn’t interested in alternatives because in her mind she wasn’t sick. She didn’t feel she needed the doctors or the medicine but she didn’t feel she needed any alternative either because in her mind, there was nothing wrong. This is why I keep saying alternatives won’t work any better than a doctor does for someone whose illness is telling them that their delusions and paranoia are real.
There are still 5 (I think, or 4) states that don’t have any involuntary treatment laws.
I’ve done a lot of research. I read a lot about Open Dialogue & Soteria. I think they’re fabulous. My understanding of both though is there is no coercion. The person has to want to participate. If I’m wrong, please correct me.
All of those things happened with my daughter. She was never over medicated. During her first break, she wasn’t coherent enough to understand anything so they told me everything about the meds, etc. And then with the Internet—these days it’s quite easy to educate oneself on just about anything. And the medical system having power over her? With the ACA, not only the medical system, but the government has power over everyone. And folks are clamoring for single payer.
She wanted off the meds numerous times & was always advised by the doctor to taper off them slowly. Most times she didn’t, she just quit them. The last time, she tapered off incredibly slowly, symptoms returned, something clicked in her & she now believes she needs them.
No meds for a first break? I’m not a doctor. But my daughter went for quite while without meds during her first break. Things only got worse,,,much worse until they gave her meds. My sister in law was never medicated…ever. She lived her life as a mentally ill homeless person for 20 years until she was murdered. Some on this site would say that was her choice. But nobody who loves her can ever remember saying that’s what she wanted to be when she grew up.
But if you have insight and aren’t bothering anyone and don’t want medical care, isn’t the problem of not getting meds for a first break pretty solvable…..just don’t go to the doctor??
What I’d like to see changed in the system is more supervised housing for those that can’t live independently. There’s other things here locally that I won’t mention as I don’t know if they pertain to all states. Thanks for asking.
I live in a state that doesn’t require dangerousness for involuntary treatment and thank God. My daughter has never been a danger to anyone, just totally and completely incapacitated by her illness & delusions. Nobody should have to have a knife to their throat or someone else’s before they’re entitled to medical care.
Having said that, I agree with your concerns albeit for different reasons. I don’t like giving the government power to do anything that isn’t totally necessary, particularly the Feds. My preference would be that we didn’t need these laws at all and care could be between the patient, family members and the doctors without having to involve the government as all as I don’t think it’s their business. When my daughter was just 19 years old, I can’t tell you how heartwarming it was to have to sit in a courtroom and testify about her behavior that had gotten us to that point for nothing more than arbitrary measures set about in some stupid law when all she needed was medical treatment. It was at that moment I wished she had any other chronic illness than a brain disorder.
I blindly assume that anybody who declines voluntary treatment must therefore be in need of forced treatment? That’s news to me. Have I posted that here somewhere? I don’t blindly assume anything. If you have insight & don’t want treatment, then don’t go to the doctor.
Can you tell me which section of HR3717 that talks about people who are “living peacefully, going by their business and making a comfortable living”?
You can choose to disengage, but you can’t put words in my mouth or tell me what I have read. I did read your piece. I am not against any of the alternatives that you suggest. I have explicitly said that numerous times. In fact, I am all for them. But, there are people whose symptoms prohibit them from getting care voluntarily who you are advocating against and are saying that voluntary services are the answer for those people with no specifics as to how that works. We have this bill about helping families because most of the hospitals have closed and everyone is supposed to live independently, except not everyone can. So aging parents do their best to take care of very sick adult children. We don’t mind. We love our kids. But you say you have the answers and when we say they don’t work, you put forth all kinds of flowery words, but no specifics. How do your methods specifically address psychotic paranoid mania with prolonged tachycardia, delusions and paranoia that the sufferer is unable not to act upon, inability to sleep, etc.,….a condition that can last for months?? As I have also posted, peers here tried to help my daughter. One guy in particular was fantastic with her. Only person better with her is me. But he was only here for an hour. Not being manic myself, at some point, I have to sleep. Do you have programs that stay with someone 24/7 until the person is better regardless of how long it takes? Do your programs guarantee the person gets better without the meds and the physical symptoms won’t harm them if they’re not addressed by standard medicine? These are questions that you should answer if you are advocating against traditional care.
You can choose to disengage, but you can’t put words in my mouth or tell me what I have read. I did read your piece. I am not against any of the alternatives that you suggest. I have said that numerous times explicitly. In fact, I am all for the. But, there are people whose symptoms prohibit them from getting care voluntarily, which is a population that you don’t want to address.
Then you are aware that some people have symptoms that prevent them from accessing services voluntarily. Thanks.
“NAMI mommies” is a compliment?
And this is the only thing I’m torn about. I too, am not sure the Federal government should be involved in mental illness. However, that would mean SAMHSA would have to go too, and the survivors really seem to enjoy that agency.
As you post this from some kind of electronic device, my friend’s son is too sick to even know what an electronic device is, much less own and use one. Your family may be better off that you disowned them.
Who would they work for? Precisely describe the symptoms one would be having.
And as I’ve stated elsewhere-I would never expose my daughter to the opinions on this site.
I have no problem with any of the alternatives that you suggest nor would I spend any time advocating against them for those that they would help….so I’m not opposing you in any way. The opposition is coming from you which is what your post is all about–opposing HR3717.
I would want to be treated.
I am not insisting on only considering medicine. I’m insisting that we need whatever works for people. I’ve never spent even 5 minutes advocating against alternatives for people. But many many people have spent countless hours advocating against the medical care my daughter needs. Sorry, I find it cruel.
She’s had a rather good life considering the severity of her illness, although I’m probably not smart enough to make that observation given my propensity towards being brainwashed and all.
We need both. There should be plenty of resources available for people who are able to access care voluntarily. There should also be medical help for those that are too sick to know they’re sick. Deinstitutionalization never happened. All we did was move them to jail. It’s not fair. I’m sorry about your mother. But my daughter’s experience with involuntary treatment has been quite positive. Literally saved her life, not to mention her sanity as she is quite psychotic absent medication. I wouldn’t mind the advocacy against this bill if you had true alternatives, but alternatives that are only accessible to folks well enough to access them on their own leaves too many people out of the equation. Your suggestions are either born out of ignorance in that you don’t understand how severe these brain disorders can be….or out of cruelty in that you don’t care what happens to people who are too sick to know they’re sick.
When my daughter is psychotic, she is unable to access any treatment on her own. She was under involuntary treatment for a very long time and it saved her life. She says so as well. She recently did an interview for a magazine telling her story. I won’t post it here due to the audience on this site and due to the animosity towards the care that helped her towards wellness. The reason I say the alternatives that were mentioned in this post don’t work is because you have to be well enough to ask for help. We have robust peer support in my state, more peer run organizations than direct care clinics. Peers go out on all crisis calls. Not one has ever been able to help her by just talking with her or listening to her. Psychotic paranoid mania is even tough for doctors to treat, but they’re the only ones that have been able to help her.
None of the alternatives you suggest work for those of us who have family members that have benefited or would benefit from involuntary treatment, hence the bill you find so reprehensible. If any of your suggestions worked, we wouldn’t need HR3717.
It’s clear you don’t understand or don’t want to understand, but it was worth a try. I can assure you, my daughter’s psychotic manic episodes were in no way meaningful nor were they caused by trauma. I’ve taken ECPR. Might be fine for people whose illnesses aren’t severe. There is no peer…intentional or otherwise…who could or would sit and be with my daughter for as long as I have while we waited for the system to help us when she was so sick. You and your Mad in America friends can keep advocating against involuntary treatment as I’m sure you will. As one of my mom friends says….we’re mad in America too. We’ll just have to keep advocating against you to save our kids not only from their illnesses, but from your absurdity and cruelty. Thanks a bunch for your concern.
Oldhead, I’m about as conservative as one can be and I’m very sympathetic to your struggles.
Someone Else, my daughter had never taken an antipsychotic med, ADHD med or any other kind of med like that before her first psychotic manic episode. I absolutely 100% believe the medical/genetic/biological basis for her mental illness. We’ll have to agree to disagree. You’ll never convince me otherwise. Her illness hit when she was 19. While she is doing far better now than she has done in the past, it’s been 10 years now. She is quite disabled. She has never been able to move out. I’ve been here for her, on her side and by her side for every step of this journey. Nobody will ever convince me that the meds do anything but help her. She has been prescribed some that didn’t work, cause horrible side effects, etc., but when they find the rights one, for her…..they are quite magical and any side effects are far better than the symptoms of her illness.
AA-no, I was not meaning anything by my dancing reference to the Alternatives conference. It was just the only thing I remembered hearing about it. My point was, if dancing works for you..by all means, do it. I’m on your side. And yes, we do need to listen to each other. And I have always tried. But I will say this, if you’re well enough/sane enough/have enough insight to not get treatment or not admit you’re feeling suicidal due to fear of involuntary treatment, then the involuntary treatment that I/we recommend doesn’t cover you. My daughter just recently told her psychiatrist that she has thoughts of suicide. If anyone would get dragged in for involuntary treatment, it would be her. But that didn’t happen. So I think those fears are largely baseless and are no excuse for leaving so many people so sick and uncared for.
Again to Oldhead, yes, let’s get back to the legislation. What I think is unfortunate is that families had to attack the Alternatives conference, the recovery model, etc. But it was necessary due to the incessant advocacy against us. If not for that, if this bill were presented, myself and all the mothers I know with kids like mine who need involuntary treatment, the doctors, the hospitals and the meds, would be crying foul right along with you. When the peer movement first started, we applauded it. We thought it was great. I even thought it was great the first few times they treated my daughter like garbage. But once the advocacy against our kids began in earnest, we had no choice but to fight back. We don’t like it. We think there’s a place for all patients/consumers/survivors (pick whichever word you prefer). But the advocacy against our kids reached a fever pitch and we had to focus our efforts on them. Again, I think it’s incredibly sad and I wish we could agree that all of our experiences are valid and need to be addressed. But as long as there are people like the author of this piece….healthy married fathers of two ….advocating against our kids getting care, we will be on opposite sides. I network with many many moms of adults who are very sick. Not one of them is healthy, let alone married with 2 kids. They have no peers. Most don’t have cell phones or are on the Internet or are able to advocate for themselves. Some are in group homes, some are in the hospital in CA…some for years due to the lack of outpatient commitment there, some are dead at much too young ages, some have killed others…etc., etc., etc. All they have is us and we won’t desert or leave them to your advocacy which casts them aside.
What you guys seem to either not know or are completely unwilling to accept is there are people who are significantly disabled by their mental illnesses and would never get care unless it’s involuntary….hence, all the people involuntarily in prison making deinstitutionalization a total myth. You frame involuntary treatment in the community as if it’s a horrible thing when the reality it’s lifesaving. My daughter was on it for years. During the time she was on it, she framed it the way you do most of the time. But since I love her, I always told her people were just trying to help her. I also explained to her that she wasn’t only person living in the community that had rights and when her behavior tramples on someone else’s rights, someone will step in. Thankfully, her illness relented enough to allow her much needed insight and she now controls her illness herself. She now says that involuntary treatment saved her life. And while portions of it weren’t exactly enjoyable, she can also now see that the behavior caused by psychosis led to some of the things she didn’t particularly enjoy. And she sees that time as a time when people cared enough to make sure she got the care she needed, rather than throwing her in a jail cell or leaving her out on the street. Psychotic mania is impossible to live with and can be quite detrimental to the sufferer with severe tachycardia and other physical symptoms that need medical attention. You don’t ever need to encourage a loving family member to make sure facilities are safe or that our loved ones aren’t over medicated. We live this life every day and probably know more about it than you do.
My guess is that the “infrastructure for alternative crisis care” will only allow those who are able to get there voluntarily. But assuming I’m wrong, what is the point in advocating against us before those places are available? I find it mind boggling that we are in the position of advocating against each other. I’ve been at this advocacy stuff for 10 years now. And for 10 years, people who call themselves advocates for people with mental illness have tried to tell me that there’s no such thing as mental illness, explained the horrors of involuntary treatment to me in much the same way you just did or my favorite…blamed me for my daughter’s illness. I don’t want to take anything away for folks who can advocate for themselves. If you want Alternatives conferences with dancing that makes no sense to me….I want you to have them. I don’t know of any family member who doesn’t agree with me on that. But HR3717 is called the Helping Families in Mental Health Crisis Act for a reason. Families have been asking for help for a long time. And the only answer you guys have given us is…….Get lost. So here we are in this rather nasty battle with each other. It is incredibly sad and I will never understand the point.
Your critics say you aren’t reaching those that are most in need? That’s because you aren’t. Besides the jail/prison system, families are taking care of the most severely affected folks. Peers have come to my house when my daughter is manic. They stayed with her for 30 minutes. Psychotic mania can last months. You don’t want her in they system involuntarily but you’ll only give her 20 minutes of your time? Another time, we had a peer come to our house to do a home visit who wouldn’t even speak to my daughter. Another time, a peer at a WRAP class encouraged my daughter to go off meds leading to a psychotic episode that did exactly what you say you’re against…another involuntary commitment. Every single one of the peer run organizations in my state only allow people to be there when they’re doing well. A man was recently kicked out of one for…wait for it…shouting. Shouting? You’re married and a proud father of two? I know many many other families who would like that for their loved ones, but they’re too sick, at least for now. The only help we get is from the medical system. It’s the only help that works. Rather than telling us…in detailed precision…exactly how we’re supposed to help our loved ones absent involuntary treatment, you advocate against the sickest people who only have their families to help them. It’s really rather cruel.