SARAH LAUNDERVILLE: Well, thanks for coming back for our last day.

We're going to start off the morning like we did yesterday, answering some questions that came on the sticky notes, so I have the first question is around pharmaceutical companies and we had a question because we had talked about sort of those potential negative impacts of using pharmaceutical companies as funders, why did we include it in our listing as a potential funder and the reason is we wanted to give you all the options that really were coming up around foundations, around funding.

And at the same time when I was talking yesterday about the difference, the thinking that needs to go into using funders, I wasn't, from my perspective only talking about only pharmaceutical companies, I am talking about all foundations, all state, all federal grants that really take a look at it and see where if their mission and values really align with yours, so I appreciate the question, because it is kind of, like, we're saying two different things to you, so thanks for asking that.

And I think Mike, he thought I was going to go longer.

Mike is up next.

MIKE BACHHUBER: There are a couple of things I wanted to add this morning.

One is we had a little bit of a discussion yesterday about nuts and bolts of certified peer specialist programs, and there's one kind, one aspect of that, that I wanted to add to the discussion, so NIL, we're a cross-disability and it gives us a particular vantage point to deal with folks who deal with multiple disabilities.

In Wisconsin and some other states, they particularly notice that emotional and trauma issues are very common among the deaf community and yet there are almost no providers of mental health services, traditional or nontraditional, that are conversant in sign language, which creates unique issues in the Deaf community.

One of the things we're starting to see, there's a program in Minnesota that has trained a number of Deaf peer specialists in Minnesota, in Wisconsin, and in Massachusetts and evidently in some other states, so one of the reasons for getting involved in some of this mental health stuff might be to make sure that people with disabilities are served appropriately.

People with disabilities other than, or in addition to psychiatric disability.

We also had a note yesterday from someone who asked, how do you balance helping someone in a mental crisis with public safety of the CIL staff, guests, consumers, et cetera?

And so we talked about this a little bit last night, and apologize because this is one of the things that should have come out Tuesday in the discussion around prejudice, fear, and discrimination.

First I want to thank whoever it was who raised that issue, because this is, it's one of those kinds of things that is a very common question, and we kind of skipped over it, so whoever raised that question, thank you very much.

It's one that people think about but are kind of afraid to raise sometimes in the IL context.

The facts are that people with mental illness are no more dangerous than any people in the community.

Study after study has shown that mental illness is not positively correlated with violence.

Once you separate out other factors, like what kind of community the person lives in, age, race, sex, people with mental illness are as violent as their peers without mental illness.

But I think that that's, people were probably looking for a little bit more than that, because it's a common concern that folks have.

We had in Wisconsin a couple of years ago two mass killings in relatively short order, and in one situation, someone went into a Sikh temple and killed several people.

In the second situation, a month later, someone went into a hair salon and killed his ex-wife and several other people.

And a particularly astute legislator in Wisconsin noted that racism and domestic abuse are not mental illness.

And in fact, when you look at where violence comes, most of the time people are violent against their loved ones.

It's people that are close to them, friends, domestic partners, co-workers are much more likely to be the source of violence than a stranger coming in.

So those are kind of the facts as background.

So what can you do?

I mean, we should all be concerned about safety for our staff and for the public and each other and for our consumers, and people can be angry and agitated regardless of whether they have a mental health diagnosis, and so it's important to learn some skills on how do you deal with someone who comes in and gets loud or shows other signs of anger or emotional agitation, and I think some of the skills we've talked about here, like eCPR, can be part of a solution, if staff are trained to do them, but in general, there are a couple of things.

If someone is agitated, you probably can't deal with them quickly.

You probably are going to have to slow down a little.

Listen to them.

Try to understand what's made them angry, and when you do that, I found, because I've done this with quite a few people over the years, that the anger can dissolve, the emotional agitation can dissolve, and then you can actually work with them to figure out what the problem is and try to make a referral if appropriate, give them the information.

Maybe end up opening up consumer service record for the person.

But I think that that is the single biggest tool on dealing with someone who is angry or emotionally agitated.

I don't know if any of my colleagues wanted to add anything to that.

SARAH LAUNDERVILLE: A couple other things we had thought about.

And one is that we did talk yesterday a little bit about this violence-free workplace policy that we have VCIL we're going to get that out to folks so you can start thinking and talking about that.

I also, in my comments yesterday, mentioned that when someone came into our office, sort of talking to themselves and sort of presenting with things that the first greeting person hadn't experienced before, then she reacted in a way differently than some of our other staff might have reacted.

And it was because of lack of exposure to those experiences, and I think creating an environment where people are really welcome because you might be the only place, they're coming in there maybe because they don't really know where else to turn, and if the more exposure, and that's true for all different types of disabilities, right?

So when you don't have exposure to other types of disabilities, and you might not know how to react.

So really making a space where you can come in contact and have conversations with folks on a regular basis.

AUDIENCE MEMBER: Hi.

We, at BCIL, we literally are right in downtown Boston, and we're also a couple of blocks from a couple of shelters and we have a fair amount of walk-ins, and I think, I'd like to think that we have an environment where folks that work there are prepared for those types of experiences, but there are times where withal of that knowledge, with all of that acceptance, there are times when somebody comes in and behaves in a way that's disruptive or violent towards staff and we've had to have them leave.

We've been fortunate where we haven't had to call the police or anything like that.

But, I can give two examples, I had a staff person that was working with a consumer and she had been working with the consumer previously, but sometimes he gets very agitated, he will stand up and stand over her and that made her feel uncomfortable.

Staff had been trained on how to get assist from other staff person, where to position themselves in the room, closer to the door, et cetera, et cetera, try to de-escalate techniques and everything and initially she didn't want to continue to work with the person, she got support from her supervisor.

I actually came in and spoke with the gentleman, we helped to de-escalate the situation and he was able to continue services and he still gets skills training from that staff person.

So that one turned out well.

I've also had an instance where a consumer of ours who had, has been getting services from a couple of different skills trainers over time, was in a space where he assaulted a staff person with a lit cigarette and burned her.

He's still able to get services from BCIL but he is not allowed to come back into the office because when he comes into the office, the staff person he assaulted that ended up having police involved, court involvement, all of these things, because now it's a case it's assault, he did in fact burn her with a lit cigarette when he was in a space where he was angry, having him in the office does not make my staff person or other staff people that are aware of the incident feel safe.

So that was an instance where it didn't turn out as well, but again, he was still able to receive services from us but he is not allowed to come into the office, so he makes appointments, staff person meets him downstairs, they go to a local coffee shop, something like that.

But, I think it is great to have the awareness and all of that stuff, but there are indeed some instances where the person seeking services is not in a space where they can be talked down or be able, and in those times they have to be removed.

This is the reality.

MIKE BACHHUBER: You're right.

And I think what you're describing is a good set of policies and procedures that have resort to emergency service and medical personnel is kind of a last step in the process.

But that if centers have skills, de-escalation skills and know when to call in a supervisor or a colleague to give them some support in that situation, those are the kinds of things that would all be part of an appropriate policy of dealing with an angry or upset individual.

So thank you for sharing that.

AUDIENCE MEMBER: I just wanted to throw that out, cause oftentimes, in these conversations, I think everybody talks about the solution that works the best for everybody, and it is always a happy ending.

Sometimes it's not happy ending.

Sometimes folks got to go.

SARAH LAUNDERVILLE: I know Ruthie has a comment.

I want to clarify that in the policy and procedure that we put together, it really talks about all of those angles.

It's not happy roses at the end of a lot of these, or some of these situations.

RUTHIE POOLE: I really want to thank Courtland, because when he says where they are, there's a lot of people using drugs, right, out front of their office and folks when they're high are not at their best.

And so I worked in the poorest city in New England for a very long time, where Justin works, Lawrence, Mass, and there's a man there, who-his trauma actually was, he's been assaulted so many times in jail as a young man.

And he's about my age now.

I've known him for years, and he's someone who gets pretty, I'm going to use a clinical term, pretty psychotic, his reality is a little different than my reality sometimes.

Not always.

Not just once in a while.

So we're at a meeting and when Courtland said they were able to avoid the police.

People are so used to being getting the police called on them, this is a guy who, I helped him get his cory, it was like this tall, like paper to paper, just this tall, and I thought, oh, my God, and what he's been convicted of is something that's going to be really hard to get him housing.

What I've been told is the two things you can't get someone housing for, one of them is arson, and you think, oh, my God, this guy committed arson.

When he was out of it, he dropped a lit cigarette in a rug in an apartment building, and he had a really bad attorney, and he got convicted of arson.

And he served time.

And so it's going to be really hard to get him housing, but anyways, I've known this man for years, and so he really, at a meeting of Lawrence Organizing Voices for Empowerment group, he really, this wasn't a one-on-one situation.

He started getting really physical, and he threatened me.

He uses a cane now, because he's had so many physical disabilities as well.

So he goes like this, and they're, like, Ruthie, call the police, call the police.

All people, many have been incarcerated themselves.

I go, I'm not calling a police, I'm calling a cab.

He goes, you can call the police on me, Ruthie.

I know you're going to.

I said calm down, I'm calling a cab, and so I called him a cab, he went home, I saw him the next day and he was fine.

He's so used to people reacting in a way of violence to his violence.

And it's like people afterwards said, Ruthie, weren't you scared?

I said, no, he's been in motorcycle accident, he can't run as fast as I can run.

If he ran after me with that cane, and this is an individual I know.

Obviously you wouldn't err on this side if you didn't know the person.

But I knew this person, and it sounds like Courtland was talking about someone they know, one of those people, or someone they know, and there are people because this person had violence perpetrated on him in the worst way, as a young person, by violent offenders in jail.

And he's been incarcerated so many times.

He's someone who is a victim so he's learned to victimize, and I think, it's hard to have a, I love this guy.

I'm one of the very few people on this earth who love this man.

They just, he's kind of a pain in the butt sometimes.

But you know, people deep down have this lovely humanity and they have stories usually but sometimes drugs get in the way and that could happen in your neighborhood, Courtland, where drugs are getting in the way of being able to talk to someone.

And I talk about alcohol as well, because there's a lot of people who are high or drunk in your neighborhood, so it's just like, you got you know your community and all communities are different and you may or may not know the person coming in the door, but they all have a story, and I just want people to remember, we all have stories.

MIKE BACHHUBER: That's important, I think, to notice, since we're talking about violence and threats, is that the most significant factors associated with someone being violent are use of alcohol or other drugs that decrease inhibitions and/or cause agitation.

So speed, heroin, kind of a whole a whole range of 

AUDIENCE MEMBER: Meth.

MIKE BACHHUBER: -- drugs.

AUDIENCE MEMBER: One of the things I think is key for folks to remember and it's a saying we say all the time at BCIL, it is a bunch of isms, it's hard to make a rational decision when you're in a state of high emotion and high emotion can be happiness, that is how people end up getting married in Vegas after knowing somebody after 48 hours or you know, anger or anxiety or anything like that.

You know what I mean?

I think we can all be cognizant, have training on how to deal with those situations.

You can also kind of be forgiving in the moment, in that split second, somebody is in your face, and swinging at you, it's not uncommon, I don't think it's common for folks to say in the moment somebody swinging on you, let me think of his story, or why he's throwing punches at my face.

My instinct, somebody is swinging at me, most likely going to have to knuckle up, you know what I mean?

Because you're going to defend yourself.

Be cognizant of all of that.

Things can happen quickly.

Folks walking off the street as a walk in, don't know than a can of paint, immediately come in and they're aggressive and we don't know this person, we don't have a relationship, and then you got your first thought is, how do I make sure my staff and consumers inside my office are safe?

Sometimes you may have to move person into the hallway to try and have some of that dialogue.

MIKE BACHHUBER: To give some perspective, Courtland, you've been working at that office for how long?

AUDIENCE MEMBER: A long time.

MIKE BACHHUBER: How many situations has it happened where someone has actually, you know, the cigarette or the, you know, cocking their fist or, you know 

AUDIENCE MEMBER: Genuine danger, it's kind of been here and there.

We do have sometimes people who will express threats over the phone.

And I sound very professional and my name is Courtland Townes the third so they are expecting a gentle Englishman.

I have had people, again, literally, consumers say I'm going to come down there and kick your ass.

And I go, okay, but when you get here, because you have to sign in at the front desk.

Why, when you get down to the front desk, show ID to come up, just have them buzz me and I'll come down and you can commence this ass kicking down here, we do not have to disturb things in the office.

Do you know what I mean?

But generally when I step out of the elevator, they have a different thought.

Do you know what I mean?

I tend to be the enforcer in the office but I'm not always there.

MIKE BACHHUBER: I ask that question, because you're absolutely right that it's real that this kind of stuff can happen, especially if your office is in a neighborhood where there's a lot of poor people who are dealing with a lot of social issues.

But even in those cases, actual threat, actual in person violence is still relatively rare.

And it sounds like you've developed a whole range of tools for dealing with folks when, you know, to deal with kind of from threat to more active threat.

SARAH LAUNDERVILLE: Gentleman in the back with hand up for a while.

AUDIENCE MEMBER: I wanted to make a comment to the aspect of the violence part.

It's really a good idea to really get to know yourself.

I know in our field we know that, and you really need to know your own emotions and how to control them.

And I just, knuckling up with somebody or whatever we want to call it, I just encourage you to get some type of training, if at all, to learn the de-escalation technique and skills and try to avoid that violence as much as possible, or even encourage it and there's lots of training out there, lots of techniques or just education so you're more aware when those things come up.

Because if you value your job and your position and you go out and you knuckle up with somebody, you're most likely going to lose your job if that happens.

Your organization might be a little different than some, but I encourage you to get that training, if at all possible.

AUDIENCE MEMBER: I will say we don't encourage fist fighting on office premises.

I also wanted to make the point, you know, for those of you who want a visual description, Courtland is 6' what?

5'10", fairly built.

I am 4'11" and a half, pudgy and have not worn pants in seven years.

I'm always wearing a dress, usually heels in the office, for a variety of reasons.

Courtland and I have very different styles, one relating to consumers, and I feel like that's also something important.

There's stuff he gets away with just by walking into a room that I'm not going to and vice versa.

You know, I'm a supervisor, I tend to deal with disproportionately large numbers of angry people because I'm who you get when you say, take me to your supervisor.

And, yeah, sometimes you know, agreeing with people that the situation is kind of screwed up, and letting them hear that, is kind of all they need, but there is a difference between someone who is angry, who is pissed off, and also someone who is talking to themselves and inhabiting a reality a couple inches off of ours.

There's a difference between that and someone who is an active threat.

And I think pretending one is the other in either direction doesn't help anyone.

SARAH LAUNDERVILLE: That's great.

Thank you for saying that.

MIKE BACHHUBER: Again, that comes back to the kind of issue of policies and training that I think you both of you have discussed that Sarah was discussing, you have to be able to judge how active a threat is, you have to be, figure out how your co-workers can help out in situations and I think I'm guessing your policies address a lot of those issues and I suspect you'd be happy to share them.

SARAH LAUNDERVILLE: Courtland reminded me, thinking about the trauma that certain staff folks have experienced as well, and figuring out when you're working through, how in practice how this is going to play out in your office.

You might not want, and oftentimes this happens, right?

Sarah has got a psychiatric disability, she can work with folks when they come through the door who are violent and that might not be the case.

That might be the worst decision for a variety of reasons.

One of the director, and that's not my work every day, logically, but secondly it could affect other trauma things, so really thinking those things through and if you're the person in the office and we do some thinking this afternoon around you know, how you're going to bring stuff back or whatever, if you're the person in the office that you were asked to come here today because you have the mental health issue, you know, and you know, that sort of expectation and weight can be very heavy on people.

So making sure that if you don't have someone in your office to kind of bounce ideas off, call one of us, we're happy to, like, just talk things through with you about that.

I don't want to speak for everybody but I'm happy to.

AUDIENCE MEMBER: We all seem to have folks with whom we work who are really skilled at dealing with, pardon the word, cranky people, and we need to kind of get used to that mind set as well, that while someone may be upset, the issue for them is really a very legitimate state of being upset.

Just like anybody else who is going to come in and be cranky.

SARAH LAUNDERVILLE: I love that you use the word cranky and I think we were talking about that earlier, that if we can start using words that really address the behavior as opposed to just saying, you know, those folks with mental health issues, you know, because it's across the board, so thanks for saying that.

We should probably move on.

We have more discussion topics.

MIKE BACHHUBER: Justin, I think you have JUSTIN BROWN: First of all, I want, thank you.

First of all, I just want to thank the person who wrote this question because it reflects thoughtfulness, it reflects honesty, and I would just like to read it to you.

There are mental psyche disorders oh, wait, sorry, I messed up.

AUDIENCE MEMBER: Did they give you all the red cards?

JUSTIN BROWN: This is one question.

MIKE BACHHUBER: Someone had a question that was so good it took three stickies.

Four stickies.

JUSTIN BROWN: So the question is, how do you respond to people with psyche issues who are harmed by the practices you encourage?

If someone is in the situation where eCPR and/or peer support would exacerbate the negative experience of mental illness the person is experiencing.

And your group has made it seem that hospitalization is a horrible thing, so that the person is terrified of seeking professional help.

What would you have that person do?

Do you think it's fair to have a person who is suffering avoid treatment?

There are mental psyche disorders that are not responsive to what you advocate.

Why do you preach informed consent and choices without informing people fully?

There are many diverse psyche disorders, and by practicing, oh, by painting these psyche disorders with a broad brush, you are creating a negative power dynamic in the community.

So thank you for the thoughtfulness and just honesty with which you've responded to this training that we've offered.

Thank you.

It's good that we're here and we feel safe enough to have different points of view.

What I'd like to start with is just that the purpose of the workshop is really to bring together the principles of independent living with the principles of our civil rights movement.

Now, many of us have been hospitalized.

Many of us have been diagnosed with a psychiatric disorder and taking medication or Dan Fisher has prescribed medication.

All of us understand that there may be times when being in a hospital or you know, a safe place is one of the options that are available to us.

It's not the only option but it's one of the options and the same might be said of a nursing home.

There may be times in a person's life when being in a nursing home just makes sense.

I think the more important question for this context, for this workshop is, okay, so you've been in the hospital, you've been in a nursing home, where do we go from here?

Is this the end?

Are you just going to be in a hospital for the rest of your life?

Are you going to be in a nursing home for the rest of your life?

And that's in a sense where the IL movement starts out, right?

It's not against nursing homes.

It's against institutionalizing people and that's what our movement is about as psyche survivors and that's what I believe the IL movement is about.

We don't want to institutionalize people you know, indefinitely.

And so if you had a sense that we were trying to limit people's options or you know, invalidate some perspective, no, it's not that.

It's how do we move forward toward greater independence, and the key message is, I don't care how long you've been hospitalized and Dan Fisher talks about Courtney Harding's research, people who have been in psychiatric hospitals for at least five years and often for 20 or 30 years.

She follows them as they leave the hospital, and she finds that people do get better.

And that's the myth that we are trying to bust is that people don't get better, that it's not possible.

Just because you've been in a nursing home for five years, just because you've been in a hospital for five years doesn't mean you're incapable of living more independently.

So, please, you know, I got my diagnosis only when I was 45 years old but when I got that diagnosis, I looked back at things that had happened when I was 18, when I was 16, periods of homelessness where I wasn't getting any kind of psychiatric care, and I thought, wow, this, you know, I might have seen things differently if I received that diagnosis at 18 rather than 45.

Does that mean I'm entirely comfortable with my diagnosis?

No.

But it does mean that I'm open to seeing things from different points of view and certainly a conversation around medication, around diagnostic categories.

We want to be informed.

Absolutely.

You can only make, you know, informed choices if you are exposed to that information, and then it's up to us as consumers of mental health services, whether those ways of thinking about who we are are valuable, and as long as the diagnosis is not a life sentence.

If the diagnosis is a life sentence to alienation, to loneliness, to despair, to hopelessness, then damn the diagnosis.

I'm sorry, that's not true.

I'll just be honest, if you give me a diagnosis, it helps me move forward to independence, I'll accept it, probably at least pieces of it, but if you sentence me to hopelessness, forget it, I'm not there with you.

So thank you.

MIKE BACHHUBER: I wanted to add on, because one part of that question suggested that the kind of things that we're talking about keep people out of treatment.

And this is an issue that has been studied, and objectively people who have bad experiences with treatment, so-called treatment, are afraid of more treatment.

And that bad experience can be medication that caused them bad side effects.

It can be assault in a hospital.

It can be all kinds of things that make a treatment bad.

For me, I was forced into treatment by my parents on an outpatient basis.

This is not as bad as some people, when I was an adolescent dealing with some severe anger and depression issues.

And that experience was so embarrassing and so bad for me, it kept me from seeking help for issues that I knew I had from the time I was a teenager until I was 39 years old.

And finally found some treatment that I thought was helpful.

And over the years, I've worked with consumers in IL centers and in mental health peer groups.

My experience is not rare.

People have bad experiences and it can be bad for whatever reason it's bad for the individual and that keeps people out of treatment.

It's not us saying that hospitals are bad or that treatment is bad that keeps people out of treatment.

It's someone's own experience with that system that keeps people out of treatment.

And so that's something, I think, is really important to underline.

Treatment can be very useful.

I've been in therapy for the last 15 years, and I find it to be very helpful for me in my life.

I'm not sure that I could live the kind of life I do right now if I didn't have that kind of treatment.

But I also had a lot of really shitty treatment over the years, and that is common.

People have a lot of shitty treatment.

Treatment can be good.

But it can be horrible too.

So I'm 

DANIEL FISHER: Also, I think what you're hearing is we're trying to sort of rebalance the playing field, rebalance the perceptions.

Right now, in most instances, it's unfortunate, I think really that somebody has a psychiatric problem, everything is tilted towards give medication and that's about it.

And if the medication doesn't work, they say, well, treatment is not working, so we have to then go to hospitalization.

So we're trying to do expand the choices, really give people an opportunity to have more in the way of voluntary services.

For some reason, and I don't know the exact sequence of it, it became the perception and then the reimbursement that people with more severe psychiatric problems weren't helped by therapy, for instance.

I was helped a lot by therapy.

And a lot of people have been, and Mike is ascribing that.

But there's not very much reimbursement of therapy under managed care now and it's from one study that was done in 1969.

One study.

And in that study, they compared medication alone, medication plus therapy, with, compared to not medication and not therapy.

They didn't find any difference between medication alone and medication plus therapy.

And on the basis of that, insurance companies would not then in the future and even today cover psychotherapy for people with severe psychiatric problems.

When that study was redone in late '70s, they looked at, why was the result the way it was?

And it turned out that the therapists that they used, were very senior therapists.

And you think, oh, that might be good.

And in fact, they were therapists that had very little experience working with people with severe psychiatric problems because the more senior a therapist you are in a clinic, the less likely you are to see people with severe problems.

The more senior therapists pick the people who have the least severe problems, so when they repeated this study, Dr.

Burt Karen repeated the study and had therapy about twice a week for people with diagnosis with schizophrenia or bipolar disorder, it was immensely helpful because you really want contact and connection with people.

So we're trying to actually, I think rebalance the information.

Because you can't even have informed consent if you don't have valid information, and we don't have that much opportunity to get our word out to the major, you know, media or to the major journals.

And I'm sorry if it sounds like we're preaching.

We're just very passionate about getting another point of view across.

RUTHIE POOLE: I'm going to hold on your question, I'm going to speak first, if I may.

I told you a little bit of my story but not all my story.

Folks often say to me, we, when I was talking about coalition yesterday, that we coalesce with NAMI Mass around issues we share but there's issues we don't because there's folks in NAMI Mass who believe in things that we don't believe in, in the peer movement in Massachusetts.

Around forced treatment, around ECT and I had a really nice conversation with someone, very lovingly was talking about their friend that was so desperate, this was yesterday that they used ECT and it helped.

And I said, oh, my God, I hope I didn't sound like I don't think anyone has been helped.

I think there have been plenty of people who said that they were helped by ice baths or insulin shock therapy, which were both common 50 years ago.

So I'm not saying, but I think in 50 years we're going to look at ECT, that's my hope, as barbarism.

That may or may not happen, because of profits that the doctors make, they do 20,000 ECT treatments a year at McLain Hospital alone, thought to be one of the best hospitals in the country.

You know that’s James Taylor, Judy Garland, all the famous people were there.

But I want to get back to my own situation, people in NAMI Mass, often say, oh you know Ruthie, I hear your message.

But my child is not like you.

They have a more severe diagnosis.

You have bipolar disorder, my child has schizophrenia.

Well, mental illness, and I'm going to call it an illness here, is not a linear, if we look at even the disease model, is not linear.

It's not, like, okay, recovery, this is what I wished.

This is what I wish.

That recovery, blah, blah, blah, and I'm cured.

I went seven years without symptoms.

And for me, it was because I was pregnant and nursing.

We assume people, women with mental health conditions are going to have postpartum.

God, I should have had 14 kids, cause maybe I'd be healthy today, but I didn't.

So I went seven years without depression and I thought, oh, my God, I've been there, done that, got the T-shirt, I know what it feels like, it sucks.

And I'm glad I have my peer support, and I never want to go back.

Well, for me, unfortunately, that's not my story.

And my story is not about terrible childhood trauma.

I had the most loving parents and family any child could ever have.

I am so grateful for that.

My story is different.

My trauma is adult trauma, and I'm not going to go into the details of that, but it's not childhood trauma.

But I don't speak to that a lot, because most of my peers in the peer movement, it is childhood trauma.

So going along, I'm someone very sensitive to steroids.

I have very bad asthma and I really should be on an inhaler but they're all steroidal, and last time I had asthmatic bronchitis, I have it again, you can hear me wheezing, was the fall of 2012, and I was what a clinician, I just learned this now, no one told me at the time.

Would call me hypomanic and I guess what that means is, you're kind of racing, you're a little high speed.

Obviously I talk a lot but believe it or not I was talking even more than this.

That's kind of a scary thought.

I interrupt people all the time naturally.

I was interrupting even more.

My friend Scott, one of us, under the table at work, we got a signal.

He'd kick me when I was interrupting people or taking over meeting and it really worked for us.

But what happened is, luckily the bronchitis finally went away, my pulmonologist said it was the worst year he'd seen in years, so what happened is in January, I felt better.

And then in February I took my kid to New York to look at NYU in Columbia.

He's the brainy one in the family.

And I started feeling those early signs of depression and it was awful.

I was, like, no.

This can't be.

I have a lot going on.

I have really, you know, I have a kid who is looking at college.

I have a kid whose friend suicided, after she was at my house on Sunday, she killed herself on Tuesday.

I have a lot going on.

My brother has terminal cancer.

My mother is dying.

The baby of the family is going to die in 12 months.

I had a lot going on.

I couldn't deal with my depression and what happened is, I went down, down, down, down, down.

What ended up happening is, I was trying to express my extreme distress.

And my husband lovingly didn't know what to do.

He does not, he's a terrible childhood trauma survivor, but he doesn't consider himself one of us.

He doesn't go there.

And so he called the police.

And I'll tell you what happens.

I live on a dead end street where some people knew I was a crazy person, but most people did not.

And on my little dead end street with six houses, two fire engines, an ambulance, three police cars.

The fire engines have to stay on the main street because they can't fit on our street.

It's that short.

And it was pretty awful.

They came into my house.

I tried to run out the back door, because I was so scared.

I was so tremendously scared.

This had never happened to me before.

It happened to my friends.

But it never happened to me.

I had never been in the hospital.

I had been dealing with mental health issues for 25 years.

I'd never been in the hospital.

So what happened is, they tied me down, they ridiculed me.

It was awful.

I remember everything they said.

They tied me down.

My neighbors were out in the street.

My children, one child was away.

One child was home.

So they put me in that ambulance.

I told you part of the story at the Emergency Room, that they said, I'm just like you but I'm going to commit you anyways.

I was not psychotic.

I was really in distress.

They put me in a hospital.

And then I developed illusions in the hospital.

They locked that door and I visited people hundreds of times, but I'd never had the door locked on me.

So what happened was, I, my delusion actually is quite funny and it's fine if you have laugh because I think it's hysterical.

They placed this fancy Newton, two of the richest communities in Massachusetts, it's Newton Welsly hospital and they take you down this other entrance, up this other elevator, where it's gross.

The floor was sticky.

It was a health hazard.

They, the, in my room, it smelled.

It was moldy.

And my, my drawers didn't fit, and the closet didn't shut.

And so what I thought I had signed when I signed a conditional voluntary, because you sign what a conditional voluntary is saying, even though they have you strapped down, I'm here voluntarily, because otherwise I'm going to be here for six months to a year if I don't sign that, because a judge is going to commit me and I knew that much.

But then because the place was so gross, I thought I was on a new, I really believed this, I was on a reality TV show.

I thought it was survivor psychiatric hospital.

I really believed that.

And my family and friends came to visit, and they thought, oh, God, she's getting really kooky, kooky, kooky, because I kept trying to tell them that this wasn't really a psychiatric hospital.

It smelled.

It was sticky, it was awful.

My grandbaby had just been born there the year before.

The maternity ward is lovely.

Tremendously lovely.

I know other people who have cardiac surgery in that hospital.

Lovely.

So I thought, this can't be a real hospital.

The workers were stupid.

I thought, these can't be real workers.

The OTs had me doing, from highlights magazine, had me circling pictures of hidden things.

I said, this can't be a real hospital.

This is 2013.

It can't be a real hospital.

So what happened is I did finally get out.

I had to, like, basically, you know, promise anything, probation you should always pick over jail.

So what I'm saying is, if it can happen to me, who knows my rights, to be locked up five weeks against my will, it could happen to anyone in this room if you get that label.

So I just want you to really think about that.

SARAH LAUNDERVILLE: Thanks Ruthie.

And I just want to add a couple of things that came up for the question around, how we think the first thing that came to mind is, this, you know, there was part of the question around diagnosis and that some folks are, you know, kind of worse off than others and that sort of thing and I think that between all of us, we have some pretty significant diagnoses, and I think that you got some examples of hospitalization that I have as well and I think that when sometimes the problem with doing presentations is we're kind of at our best, you know, and we're trying to be at our best and then tonight we're all going to go home and cry our eyes out like we might have last night, maybe not everybody but certainly me.

There's a lot of emotion that goes into something like this.

And I suspect that folks here are having that same emotion, and support might be needed.

What I wanted to touch upon is the hardship that family members might go through when making decisions about someone, and in particular for me when my parents really didn't know what else to do and I think Mike talked about this a little bit with his own experiences, and they went and asked lots and lots of people, what do I do?

And in the end that was hospitalization and they thought that's the best thing for me and I love them for thinking and trying to figure out the best things for me, and there as in rage, angry, about the treatments that happen.

Had they known, maybe they still would have made the same decisions.

Maybe judges still would have made decisions about me but trying to navigate that and I think the part that resonates is this connection thinking that secluding somebody in a room, so there are these places sometimes called quiet rooms in a hospital, if you haven't had these experiences it's important to know where when you're having a hard time, they put you in a locked room with maybe a mattress, possibly a bathroom, depending on, there's a privilege system, you might be allowed to have a bathroom nearby, you might be allowed to go out on the grounds.

I developed, I started smoking while I was institutionalized the first time.

The first time was six months that I was institutionalized.

And the only time you are allowed to go outside was if you were a smoker, so pretty quickly I picked up smoking because I wanted to go outside.

It made me sick.

All these sort of things that come along with that.

Those decisions that parents and family members are helping or trying to make for you, depending on the circumstances, are horrible.

My experience and diagnoses came from childhood, extreme childhood sexual trauma at the hands of my stepfather, and when you go into a hospital, one of the common things, I just want to be clear about when we use the word forced medication, I'm not talking about medication that's prescribed by a doctor.

I don't feel like that's a forcing of medication.

What I'm talking about is, when you're in a hospitalization, and you sort of start acting out of control.

What happens is, the workers, in my experience, forced me to the ground, held me down, and shot me up with thorazyne, as a person who had been drugged by my stepfather so that he could have sexual, you know, assaults on me, that's pretty retraumatizing in a whole different way, right?

And I don't mean to be so graphic, and I could be more graphic and I won't be, but I think that having some context about where we're coming from and where many of our peers come from, it's really important around that, the more harm that can come.

I think those are my, go ahead.

AUDIENCE MEMBER: I'd like, I have a couple of questions, and go back to, is it Mike, what you're talking about youth.

I had the great privilege to start at our Center for Independent Living doing youth services, and my pie in the sky dreams where I was going to help little kids with Down's Syndrome get included in their classrooms.

And the reality was, 85% of the calls families with kids with emotional or behavioral disabilities, they left in handcuffs, had inappropriate restraints, seclusion, so most of these families are traumatized and they don't understand what's going on with their kids, they have trouble getting the proper diagnosis and treatment and how is centers for independent living, how we can help them.

And the second part is, is there a movement for that peer model among youth?

You talked about the different things going on across the country as far as peers.

What about our youth and how helpful they can be to each other.

Because, I think, sometimes it's the same old stigma, the stigma and embarrassment among their families and themselves and they don't want to be different.

Even our kids with learning disabilities don't want to disclose because disability is bad.

And so how can we help that?

RUTHIE POOLE: Thank you for that question.

That's a great question.

In Massachusetts, we have two organizations.

There's PPAL, which is the Parents and Professional Advocacy League, and how they started, they're parents of children and adolescents and young adults now, children with emotional difficulties and lived experience.

They found that NAMI were my parents age.

That NAMI, they were finding in Massachusetts that most NAMI members were in their 60s, 70s, and even 80s.

One of the greatest leaders in Mass NAMI, who I love, Sid Gelp, he told me at their walk that he's 87.

I'm like, oh, my God.

So they weren't feeling any, if the NAMI parents were talking about 40 year old children, they didn't feel like support, so they got together and they started this really cool organization.

I think it's called PPAL, P-P-A-L.net and they get, the nationwide organization is Federation on Children with Special Needs.

You guys probably work with them.

And they tend to have state chapters.

So that's support for the families but then PPAL realized, oh, my God, we're still involved in this organization and now our kids can speak for themselves.

They're teenagers and young adults.

It's really cool.

They have organized called Youth Move National.

And it's youth, Y-O-U-T-H.

And then move.

And move stands for something, M-O-V-E.

And it's really cool what they're doing.

They have, at the Worcester, second biggest city in Massachusetts, that is where Youth Move is out of.

A lot of colleges in the Worcester area.

We like to, you know, think we're smarty pants in Massachusetts, not just Boston but Worcester as well.

It is really cool cause they have one support group that's, like, for young adults and then they have one for kids.

How cool is that?

These are 11 to 18 year olds, or something like that.

Anyways, so, there's some really cool things going.

We did young adult, when I referred to being on the young adult team, we used to do that, but they really need to organize themselves.

So you should check into that.

They're great organizations.

MIKE BACHHUBER: Okay, so we have taken a little bit more time than was on our schedule for this, but I think we were feeling like we had some things that we really needed to say, and I want to thank the person who raised that question, because it is a very important question.

I also want to extend that if anyone was, had their own experiences triggered because of that discussion, I think all of us are trained in peer support, and 

SARAH LAUNDERVILLE: Not me.

MIKE BACHHUBER: Four of us are trained in peer support and we'd be happy to help you process that.

And we'll be going around the room over the next hour or so, so just pull us aside and we'll be happy to talk to you.

Or during the break, sure.