DANIEL FISHER: So we've already, we've started some of the discussion of the consumer survivor ex-patient movement, and I'm going to start a little bit with my own personal involvement I had my own experience with the mental health system, very direct experience in my 20s.
And it was a little bit ironic.
I have a PhD in biochemistry, and I went to work at the National Institute of Mental Health to try, in 1968 to try to determine the so-called biochemical basis of mental health issues and I say so-called because they still haven't found any.
But I was a very eager young biochemist in the laboratory of neurochemistry studying serotonin, dopamine, biosensis and it was, I was convinced at that point in my life, if we just found the factors that regulated the senses of the neurotransmitters that then we would be able to define what made people happy and unhappy.
And you know, the drug companies still think that's possible, even though as I say, they have found no evidence that these problems are primarily biochemical.
Of course, there's a biological, you know, component or factor in everything, probably, you know, involving life.
You breathe, you, you eat, cry.
These all have a physical component to them, but the idea that your life and your happiness, your dreams and hopes are all determined by neurotransmitters is a rather discouraging thought, and in fact, the more I did research into the so-called biochemical basis of happiness and unhappiness, the more unhappy I became, because I found, and I was telling a former boss of mine about this, I remember the exact day when I decided I had to leave the laboratory, and that was the day I was looking at the effective temperature on the sense of neurotransmitters, and temperature, you know, pretty basic variable, and what is that noise back there? 
Is that out in the hall? 
Maybe could shut down the hall noise.
So temperature.
People, when you eat a meal, you probably have heard, you shouldn't have cold liquids when you eat.
And the reason for that is, a decreased digestion, so you've now gotten some very practical knowledge today, shouldn't have cold beverages with your meal.
And that's because your stomach enzymes are working hopefully to digest your food.
But there's not a big variability.
You still have some digestion that goes on, but not a lot, not as much, if your temperature of your stomach goes down.
So if it goes down, you know, a couple degrees, maybe there's 10% less digestion, but for neurotransmitters it turns out the discoveries that I was making, was there's a huge effect of temperature, temperature alone, just a one or 2-degree change could be like a 20, 30% change in the production of dopamine or serotonin, which, again, means if you can raise your body temperature, you'll probably be happier in a way, and so exercise and you know, being in good condition, your heart working well, breathing well, they all help, but when I looked at these results, I went, oh, my gosh, there has to be a self.
There has to be a person.
You can't determine all of what you are by just the physical variables of life.
You can't be determined by, you know, temperature and oxygen and food alone.
It all has to be integrated, put together.
And this drove me over the edge.
I had spent all my life to that point, until I was 25 or 26, trying to get to this biological deterministic idea of life, and then I found it was really not going to work.
I was also my own therapy, and looking at trauma and history and you know, realizing that life would only have meaning if I could invest meaning in it.
Wasn't going to be given to me.
It wasn't going to be a program that was installed inside me.
I had to find my dreams, my passion, and actually, where I found a dream was ironically, again, was being locked up in a psychiatric hospital.
I decided that that was the worst place to begin your healing, was being involuntarily hospitalized and that's when I decided I would become a psychiatrist and help people get out of psychiatric hospitals.
So I, I then decided I wanted to go to, to do my residency in a place where there was a ex-patient movement because '76, there was already this beginning of, there was Madness Network News.
This is actually '78.
But it first started in the Bay area, Madness Network News, it was put out by the network against psychiatric assault.
You get the idea, sort of, of this, the names, right? And it says, all the fits that's news to print.
And you can see, this hasn't changed very much, the hell with their profits, stop for striking of psychiatric inmates, 1978, still the problem today.
Outpatient commitment is now the new form of forced drugging, not only in institutions but our communities have remade into institutions also and this is a big problem in terms of peer support.
Are peers goes to be hired to increase the coercive reach of psychiatry into the community or peers actually going to be advocates who help people's liberation and I would really caution you all about the rush to hire peers and having them be co-opted into the first function and not the more historical function.
With Medicaid reimbursement and record keeping and diagnosis, we don't, we really hope and pray that independent living centers don't just become another mental health center or you know, a branch of the mental health center, because you can offer so much more and historically have offered so much more.
So I, my own history was, I decided, from reading Madness Network News, which I was diligently reading while I was in medical school, was keeping me sane, that I would go to Boston, because there was a group there called the Mental Patient Liberation Front which we talked about a little bit before.
I wrote to them, I said, I'm coming there to do my residency in psychiatry, at one of the Harvard teaching hospitals.
I want to be a member of your organization.
They wrote me back and said, you can be a member as an ex-patient.
That was the designation but not as a psychiatric resident.
I'm, like, how do you do that? 
And this has been a problem in our movement for a long time, is the how much of a separatist movement should it be? 
How much of a movement that can actually be more inclusive of people that actually have had some training in the mental health system? 
So they actually, David Oaks and Judy Chamberlin were the leaders at that point, we'll form a separate group for you and other people, friends of MPLF, so I could never go to the business meeting because that was for people that were purely ex patients and not contaminated by professional training.
But I also understood and understand the caution about having, you know, sort of well meaning professionals, and then you get into the question, what does it mean, that lived experience? Who actually is an ex-patient? 
I mean, the very designation, ex-patient, carries with it most likely you were hospitalized or institutionalized, and most likely you see yourself as ex, as having left the system.
And today we have consumers, mental health consumers, somebody who is receiving services, and then there was the designation psychiatric survivor which didn't mean somebody that survived their life but somebody that survived the mental health system.
So consumer survivor, ex-patient, CSX, sort of inclusive and then we got kind of tired of saying so much, so many different designations, people lived experience of and then you can be a bit more inclusive, recovery, recovery from what? 
Recovery from, you know, trauma.
Could be recovery from the labeling process, and people last night were asking me, so you think you've, you think that people can fully recover? 
Yes, I do.
And I make a distinction and the Empowerment Center we make a distinction between recovery from the label and the position in society of being designated as having a mental illness, which is a very special case, and then you can recover a place in society, you can recover as a full citizen of society but you continue to heal, as everyone does, so healing from trauma, healing from, you know, being human, unable to be human.
And healing, healing then is inclusive of people with all interruptions in their capacity live a full life.
But recovery, we tend at least the Empowerment Center to specify that's recovery from being labeled mentally ill.
Then you get into the question, what is a psychiatric disability then? 
Is that the same as a label of mental illness? 
And do, if somebody has recovered from mental illness, do they still have a psychiatric disability? 
I consider using the ADA definition that if people have a history thereof, a history of mental illness, and yet have reached a point of being able to function society can, should be covered by the ADA, because the discrimination, the prejudice, that continues to exist, so you don't have to presently be necessarily getting psychiatric services and still can carry with you the history of a psychiatric disability, but this is probably, this is going to be a question that will come up a lot, who is, the question is, who served? 
And the question of who qualifies as a peer? 
This is, who would have thought that it was a club that people would be clamoring to get into? 
I'm a peer, I'm a peer, I'm a peer.
Because now there are jobs for peers.
Twenty years ago, everyone was saying, oh, no, no, no, I'm not a peer.
I'm not a peer.
That's a frightening label.
But the VA just hired 800 peers and they consulted with us at the Empowerment Center, well, who is a peer? 
And the same thing with peer-run respites or peer-run organizations.
What do you all think is a definition of a peer, by the way? 
AUDIENCE MEMBER: A peer, I think in this context, someone who has been through more experiences, because they have been through some more experiences, it makes them, they become a specific asset to independent living center, VA, or agency, company.
DANIEL FISHER: A shared experience.
Yeah, yeah.
AUDIENCE MEMBER: Sorry about that.
It's interesting, Dan.
I don't use a peer.
I think peer is an adjective and not a noun, because two psychiatrists are peers to each other.
DANIEL FISHER: I know.
Psychiatrist would fit this definition.
AUDIENCE MEMBER: We all need peer support.
Whatever your field is, you need to talk to others in your field that don't have a hierarchy, right? 
And so I like to say peer worker or peer specialist, or person with lived experience, because what I worry about, and I'm not challenging you on this, I'm kind of challenging all of us, is that it's just a new label.
And so I like to use it as an adjective.
DANIEL FISHER: So who would be, who would be hired though? 
RUTHIE POOLE: I like to use personally the term a person with lived experience.
I say for myself, mental health diagnosis.
When I'm saying it the long way, to include, I say mental health diagnosis, trauma, and/or addictions.
Because I want my brothers and sisters in the addictions recovery movement to know, they just came through a different door than I did.
So it's just a thought.
DANIEL FISHER: It's a, it's actually a practical issue too.
And if you have a job that's posted, you know, say for the VA, and it says, peers, or peer specialists, and they say, well, what, what degree of being labeled? 
I mean, somebody can say, well, I take Prozac, I'm a peer, and I had some trauma, I'm a peer, and I don't know.
I think actually an interruption in your life is a significant part of it, at least some period that you weren't able to live your expected role, you weren't able to fulfill your, you know, as a worker, parent, or student, if you're a student age.
Maybe three or four months, something that was really significant or you lost your rights for a significant period.
Your rights were violated in some way, so involuntary treatment.
I mean there are some, that's it, no question about it, you share an experience, and shared experience, the experience of having been locked up was really where our movement started.
So this, this movement was a movement of people, as you can see, psychiatric inmates.
I didn't mention that.
That's more than ex-patient.
Because when you're involuntarily hospitalized, you have an experience that you never would have expected.
You lose, you're no longer covered by the Constitution, first of all, and even when you're discharged, your constitutional rights are stripped from you, your children can be taken, your property can be taken, you can be forcibly medicated, so it's, it's not quite the same as other disabilities.
You're not forcibly treated in the same way, although people are put in nursing homes and you know, certain rights are violated, it's not systematically applied in that fashion.
And it's disturbing, and little known fact, that there are two legal systems.
There is the law of the land, which is our Constitution Bill of Rights, and there is psychiatric law.
And if you're labeled with a mental illness, you are no longer covered by the Constitution.
People aware of that? 
AUDIENCE MEMBER: No.
DANIEL FISHER: No.
Most people aren't.
Most legal scholars aren't.
Once you're locked up it becomes extremely apparent, that you're not covered by the Constitution.
You go to a court, and they don't turn to your lawyer and say, tell us about, you know, your client.
They turn to your psychiatrist or the sane psychiatrist, and say, is this person crazy or not? 
AUDIENCE MEMBER: Disability 
DANIEL FISHER: It does have similar.
There isn't a set of laws for hospitalizing people with developmental disabilities based on their disability, guardianship but 
AUDIENCE MEMBER: At one point, in Hawaii, and I think probably other states have the same thing, was people that were institutionalized because of developmental disabilities were called inmates, and you know, had that 
DANIEL FISHER: There are some parallels.
It's true.
AUDIENCE MEMBER: The other thing that, like, the, I would like, when you all revisit your time line here, the whole eugnics movement, needs to be like, really documented as part of that.
Because that still lingers as one of the 
DANIEL FISHER: I was in Berlin recently, and the T4 memorial there is so chilling and they, people familiar with the T4 project in Germany? 
It was the address for the administrative headquarters for the, that section of the German government from the 1933 until the end of the war, that designated who was going to be exterminated and who wasn't.
And it was systematically first applied to people with disabilities and especially psychiatric disabilities.
Close to 300,000 people with psychiatric disabilities were the first victims of the, and it was, it was more than eugenics, that was just the Holocaust, but the, the records, the systematic way in which they went about it, the labeling process was crucial and very first thing is, if there was a label, and once there was a label, then there was, they marked in red, you know, this person would then go to the central headquarters for extermination, and I think, that's also one reason, be very cautious about biological determinism because it was really based on the notion that these were permanent conditions.
And that people would not recover.
They were useless feeders, we were designated as useless feeders and would be for the rest of our lives, and so recovery becomes an extraordinarily important civil rights question too.
If people can recover, full and meaningful life in the community, and I think it's better to say, recover a full life in the community than just recovery, because you just say recovery people think, oh, really what we're talking about is symptom reduction and medication compliance.
No, we're talking about actually living a full life in the community.
And I don't know if, what recovery, what does recovery mean to you all when you hear that word recovery? 
What does it sound like? 
AUDIENCE MEMBER: So this, this is Ali.
I think, I actually went to the second annual trauma conference in DC, and I'm very new to being in those spaces, and there was a lot of talk about recovery.
And something that I struggled with is that they didn't define it in the way you defined it, because I think a majority of people were on the same page, but for me, I had an initial resistance to the term recovery because a majority of my education on disability identity and disability pride and culture has been anti-cure, anti-medical model in a lot of ways, and the term in itself, recovery, automatically for me was like, oh, people are talking about no longer having these conditions, disabilities, et cetera, and so I think that there's that confusion there, and it, and in the first moment, I was, like, wow, this seems anti IL and it's not at all, but that word alone, without the definition, I had some struggle with that.
But at the same time there's such a historic importance to that word, especially to communities that I may be a part of but haven't been, like, as active in, so it was a really interesting 
DANIEL FISHER: I'm glad you brought this up.
This has been one of the major barriers in getting the two movements to work together, has been a misunderstanding of how the term recovery, the concept of recovery is used within the consumer survivor movement and how it's perceived by the independent living movement, and this question of cure, I mean I was so shocked, it was actually Becky Ogle, I think, that brought this to my attention first.
She is a long term activist and we were both working, I think, for Kerrys campaign, or something, and she said, I hate that term.
I hate the term recovery.
Can you just stop using it? 
It was, I said that's like saying to your movement, can you stop using independent living? 
What do you mean? 
That's our whole theme, so then I said, so what's the problem? 
She said it's a medical idea.
My God, we're antimedical.
What are you talking about? 
So then, then I realized, we should say recover a life.
That's really what we're talking about, is recovery of a life, and that came through in Spanish, was where we first were able to grasp that, because first translation of recovery in the Spanish was.
[ Speaking in foreign language ] Then I started asking experts in Spanish, what does that mean? 
That sounds medical.
They said, oh, yeah, that's a medical term.
You recuperate from a cold, you recuperate from broken leg.
I said, oh, my God, we can't use that term.
Instead, our translations, at least the Empowerment Center, we use (Spanish): recoubrar del abreda? 
Recover a life, and that's really what we're talking about, recover a life in the community, and once you look at it that way, it's like, oh, that's the same theme as independent living and we're not saying that people have to change.
It's like saying people left-handed have to become right-handed.
We look at the world differently a lot of times and that's a strength, not a weakness, and the world has to change to be adaptive to different perspectives in world views, so it is, that's really more the independent, you've got the microphone in your hand.
AUDIENCE MEMBER: I do.
It's a very subtle signal.
DANIEL FISHER: Subtle message, yeah.
AUDIENCE MEMBER: It's just a quick note that I've heard the distinction kind of usefully framed as recovery of versus recovery from.
DANIEL FISHER: Recovery of and recovery from.
AUDIENCE MEMBER: The recovery of your place in the world versus recovery from X symptoms, X diagnosis.
DANIEL FISHER: Recovery from the exclusion that occurs when you're labeled.
The labeling process is a marginalization process.
You're recovering from being labeled, in a sort of life changing way.
You can have a description of, this is how I respond, you know, during certain stress periods as opposed to, you are schizophrenic, so it's, it's both, I would say.
Both from and to.
AUDIENCE MEMBER: I think though as a movement, we would do really well to, as you have, clarify which of those things we mean, because recovery is kind of a sexy term now.
Everyone wants to use recovery, whether or not they're, embeded in the movement.
DANIEL FISHER: Whether or not they have any idea about they are talking about.
AUDIENCE MEMBER: And I've seen, you know, national trainings, where recovery is described as symptom recovery.
DANIEL FISHER: That's terrible.
Drug companies are, they're talking about recovery.
Yeah, you're right.
Now, we do have to be very cautious about it.
There are a lot of slides and maybe you should just refer to them in the packet.
I really like the richness of people's involvement too.
So I just briefly say for myself, Judy Chamberlin was a central figure in my own education and mentoring is, I think, a very important way of learning about movements, and she was very, very clear about what was going to be valuable and what wasn't.
Yeah.
RUTHIE POOLE: It's interesting, what Ali was saying, because the other thing, the other side of that coin around recovery is we talked about psychiatric disability.
And there's a lot of folks in the mental health peer movement who reject disability, that description.
DANIEL FISHER: It's a problem.
Problem how to bring movements together.
RUTHIE POOLE: A lot of folks who are deaf that reject the term disability.
So sometimes our words get in the way.
DANIEL FISHER: Yeah, yeah.
No, it, it's an other ability I think is probably, a lot of people with disability descriptions, not only that but other people too, feel they're very able and you don't have to be able body to be able to do a lot.
Yeah.
AUDIENCE MEMBER: It sounds really simple but language is important and semantics are important, and I think we have a duty to kind of explain what we mean because at the end of the day, all of it comes down to context, right? 
So if everybody in this room, when we say consumer, because of the context that we work in, everybody knows what we mean.
But if I go over to a workshop on the other side of this building, and it's a research and development for, you know, AT & T, their concept of consumer means something very different than what it means to us.
So oftentimes you'll hear recovery, folks in the substance abuse models recovery means something very different than in what we're talking about today.
So some part of us, there's a duty to us to conceptualize and explain for the purposes of what we're talking about and this is what we mean.
And it is simple stuff, when we interview folks for direct service positions at the ILC.
One of the first questions: what is independent living? 
What is your philosophy of independent living because you can ask ten different people and ten people who worked in IL for 20 years and you might not get the same answer.
DANIEL FISHER: Okay.
Well, I'm going to quickly go through the slides, because I have slides.
I don't know why.
But I will highlight a few of them.
Here, for instance, '60s and '70s, civil rights became really a big part of our life, and I do worry that today there isn't much understanding or emphasis on civil rights, or rights at all, and I don't know what's happened to that.
I think younger people are now starting to get in touch with it.
There's a whole lost generation I feel though between my generation and the people in their 20s and 30s.
Is the me generation maybe? 
I don't know, look around here, there's sort of a younger and then there's older.
I don't know if there are many people in their 40s and 50s.
But it's, it's a, it's a, that was a period of time when it was me, me, me, and, but in the '60s and '70s it was like, what are we going to do to change our culture and get people out of hospitals? 
We didn't think enough about what are they going to do when they get out of the hospitals and we didn't think enough about the fact the medical model remained in place so people still carried hospitals in their head.
We got people out of institutions, we did not get institutional thinking out of people, and, but we did start to meet, you know, self-help groups, but they were really peer support in the sense of mutual support, and I think it is a big distinction.
I think we almost ought to distinguish, continue to distinguish or especially distinguish between peer provider services and peer mutual support.
And I, you know, I worry.
Everyone says peer specialist.
Peer specialist for provision of services is different than peers who are in mutual support.
And not getting paid because once you pay somebody, you create a difference in their power structure.
And here's Howie the Harp, a bigger than life, and he was very big, figure, and definitely an early, very important leader.
He called us crazy folk.
He had a cane.
He'd lift up his cane, I'm here to raise cane.
He had a great sense of humor.
He died at the age of 42.
Lived about three lives.
Started three different self-help groups on different coasts, and formed a bridge between the IL in Oakland, California, and the consumer survivor movement there.
It was fantastic.
And here's Judy Chamberlin, she died physically about five years ago now.
But her spirit certainly carries on, and she was relentless and her book, On Our Own, was fantastically important book, still is.
You can still get it through the Empowerment Center, and she really laid out, the subtitle is very important, Patient Controlled Alternatives to the Mental Health System, if you are still puzzling and struggling with, do you need an independent system? 
I think in many ways you do.
And I think the IL centers can really help with that.
That's why I think the IL centers hopefully won't just fold themselves into the system of mental health but will actually offer an alternative to the system of mental health.
Yeah.
AUDIENCE MEMBER: So is the I was just going to ask, is the book still relevant? 
DANIEL FISHER: Is it what? 
AUDIENCE MEMBER: Still relevant? 
DANIEL FISHER: Yeah, yeah, more relevant than ever, actually.
Extremely relevant.
Because this issue, the more you pay peers and peers work in mental health systems, or peer specialists or people labeled as peers work in the mental health system, they're co-opted.
If you're paid to check people's medication and write treatment plans and you're indistinguishable, the only distinction is you're not paying as much.
It's really like a way of getting services for less money, and we shouldn't sell ourselves short that way.
Another issue of the Madness Network News and over here on the right, by the way, are the two founders of it.
That's Wade Hudson and that's Leonard Frank.
Leonard Frank, there he is, he just died recently at the age of 82.
Another very important pioneer, founder of the Madness Network News, and a, shock survivor, insulin coma survivor he had to relearn everything, and then wrote extraordinarily important books about the dangers of shock treatment and was a visionary, and his beard, by the way, he was hospitalized because he grew a beard.
His family, he became a vegetarian, early '60s, he was like a beatnick and his parents had him hospitalized over a year, gave him shock treatment.
Shaved his beard.
Once he got out, he kept that beard forever.
And here's another, another one of early activists, Cookie Gant, and the arts are very important to our recovery.
And she also brought the gay and lesbian movement together with our consumer survivor movement.
And it's a liberation movement.
Against a lot of things, against forced treatment, against inhumane treatment, ECT, seclusion restraint.
Sanism.
Mentalism.
Some people are sane, others are insane.
I think you have to go insane to become sane often, because we're living in an insane world.
Against medical model but for consumer survivor-run alternatives, nothing about us without us, so we started to reenter the world, I don't know if that was good or bad.
Transitioning.
You know, you have to be aware of what you wish for.
So in the '80s, we wished for, you know, financial support of consumer survivor, ex-patient run alternatives, and once we got them, we're sorry we got them, sometimes, because they come with strings if not ropes attached.
Here's another early leader, she's still around, Sally Zinman.
California leader.
And I want to say one word about her in recovery.
We did interviews at the Empowerment Center in the late '90s, '80s, '90s, and we found people, like my own situation, labeled with severe label, hospitalized.
Nobody could argue that we hadn't had some kind of severe issue, and then became, you know, leaders or activists or you know, not only running our lives but actually doing more than most people.
Of course, it's like if you're a woman, you have to do twice as much as a man to be considered equal, if you're labeled mentally ill you have to do twice as much as a person that's never been chronically normal person who is not labeled in order to be equal what they do.
And so you know, and then you do a lot, like I became a psychiatrist and you know, I have a family, and contributed in various ways, so you never were mentally ill.
There's such a incredibly deep-seated belief that people don't recover a full life, viable life in the community.
So Sally, I said, when had your recovery begun, and she said, I was labeled mentally ill.
I said, oh, that's interesting.
What do you mean by that? 
When I first had what they called symptoms were actually, that was the beginning of my recovery.
And her main symptom was she was not Sally Zinman.
They said, you must be crazy.
She said, I was crazy to think I was the person that was Sally Zinman and she had to reinvent herself and become a new person.
And they said, that's crazy, her family locked her up for two years.
She said it was only by rejecting my original designation of who I was, according to my family, that I was able to recover as a full human being with my own dreams, my own life.
So it's a complicated question, do you have to sometimes go into another reality in order to recover a full humanity? 
I think I had to in a way.
And sometimes giving too much medication too soon for too long interferes with your capacity, actually, integrate as a full person.
But that's a whole another talk.
And I can't go into that any more than just say, don't be so sure that these are ordinary illnesses like diabetes and you just restore some chemical.
Sometimes they are very important steps in people's development.
So we tried in the '80s to have positive instead of negative values and I'd say self-determination and choice, and that's where there's an intersection, very much with what I understand independent living and Charlie Carr and Fred Fay, Justin Dart, they all sort of hammered into me very clearly the consumer choice and consumer control were the fundamental values of the independent living center, and independent living movement, and I said, well, that's very much what ours are too, self-determination.
So I would say making your own decisions, having a voice of your own, being able to effect the community you're in, that's really what we think of when we think of recovery.
And so our, we started, this is, this is sort of the first alternatives conference, which is very important, started in '85, but it sort of is a mixed bag because that was the, that year was the last of the previous conferences which were called conferences for human rights, and psychiatric oppression, ending psychiatric oppression.
The government funded this alternatives conference and took the place of the earlier conference against psychiatric oppression and for human rights.
So very stark event that happened in 1985, and although there's some celebration and we tried to preserve alternatives, we probably need to go back and have our human rights one again and go back to the, you know, it was out in the fields.
It was, we funded ourselves, and one needs to be careful about government funding, because it really does determine a lot of what you are able to do.
So the, this is Jean Campbell, did a very important project.
It's interesting, what is not on this, though, most important finding, which was, I think, that 48% of people who were involuntarily hospitalized said they would never go back to a mental health center because they were involuntarily hospitalized.
If you're wondering, where would be the most important opening for independent living centers? 
I'd say it was for people who were, had been involuntarily hospitalized because they don't want to go back to a community mental health center, and you know, you don't have mental health in the name of your center.
That's good.
And I would say whether it's a, a separate program within the independent living center, I would try to keep mental health out of the name.
And we've developed actually through the Empowerment Center an alternative way of helping people, we call it emotional CPR and part of the appeal is it doesn't have mental health in it.
So I would say your strength is to avoid that term, because it carries with it such a stigma and it's a stigma of coercive treatment.
Yeah.
RUTHIE POOLE: When I left Northeast Independent Living Program eight years ago, in the community of the mental health peer movement, the word we used at that time, and I don't know if you still do in the IL movement, was peer counseling.
And I don't know if you folks still use that term.
Is that still used? 
And so, and so counseling is really a red flag, just to let you know, those of us lived experience.
We kind of stay away from counseling.
So in, in the mental health peer movement, we tend to say peer support.
Rather than counseling.
Just to let you know that counseling will make us run the other way.
DANIEL FISHER: Yeah, I would avoid counselor.
AUDIENCE MEMBER: Back to context again, that is one of the core.
Well there is five core services now, a number of years ago we stopped using it.
It's a confusing term.
A, we don't want people to come with the expectation that we have certified counselors because we do not, and so we switched to peer mentor and peer support but we don't use that term.
It's not in our brochures at all anymore, because of the flag that goes up.
I think it confuses people.
People come in with the expectation, oh, you're a certified counselor.
No, I'm a person with a disability and we don't pair folks up by disability but as a peer I've had experience disability and navigating some of the same systems.
That's what I was about.
We don't use the term.
DANIEL FISHER: I'd like to end with one more 
AUDIENCE MEMBER: I just wanted to piggyback on that.
Nationally, most of the centers use terms like peer support, peer mentoring, and peer advocacy.
DANIEL FISHER: And not peer counselor.
AUDIENCE MEMBER: Not peer counselor, because of those reasons.
DANIEL FISHER: I would say, try to differentiate yourself from the mental health centers as much as possible.
Don't try to mimic them.
Don't try to be like them.
We're trying to get people out of them.
They've just, they just aren't the best place for people who are trying to recover.
I think you could differentiate and say, well, somebody really acute problem and they need crisis services, then maybe the mental health center has something to offer, but if they're trying to work on their long term, recover a life in the community, I think you all have much more to offer.
I'd like to end here with, this is really answering Ali's question in a way, and the one that keeps coming up, are there parallels, differences between the recovery movement and independent living movement and there's another even more extensive description of this, but the goal is full participation in the community of recovery, living independently in the community.
Is that fair description of independent living? Identity, you're a person first, not your diagnosis.
That's clear parallel.
Self-determination and choice, consumer control and choice.
Supports, move from clinical to life coach and peer support, just as we're talking about.
So those are more than just terms.
Those are concepts that you're trying to help people not just reduce symptoms and take medication, but also live a full life and, and that's, that seems that PCAs and peer support, that's the goal, is to live outside of an institution, and self-help centers are important part of both, and that's another, another theme, I think, to bring up, in this conference.
What would be the relationship and can be between independent living centers and independent living center movement and consumer-survivor movement and advocacy centers or advocacy, such as empower and how it can work together when they work separately, and I think Mike, Mike, are you going to, you're going to follow me, right? 
Yep.
Here's Mike.
MIKE BACHHUBER: Okay.
Well, thank you all very much.
That's [ Applause ]  Thank you.
All righty.
Well, as oftentimes going to happen with this kind of thing, he covered some of the things that I wanted to talk about rather well.
Let's just talk about eCPR for a quick second 
DANIEL FISHER: I didn't get a chance to talk about that.
Do you want to talk about it? 
MIKE BACHHUBER: I think you're more of an authority on that.
DANIEL FISHER: I'll just say a word about it.
So we've made fair amount of progress and, for better, for worse, of getting the mental health system to think more in terms of recovery, and then they say, how do you implement recovery? 
How is, you know, recovery from mental health issues implemented? 
And that's one of the reasons for developing this emotional CPR, it's not just for people labeled with mental health issues.
It's actually for everyone, and I think it would be very useful, helpful, in independent living centers because you don't have to say, oh, we have services for people with psychiatric disabilities and other services for people not labeled.
In fact, anybody that comes in, you know, if the staff and everyone there feels comfortable in being with people who at times have emotional distress, whether they're labeled or not labeled, that would be very valuable for the staff, and also as a valuable way to, is that the clicker? 
Valuable way to decrease the stigma, because this is really, emotional distress is shared by everyone.
And so this is a parallel to CPR, just as physical heart needs attention, if your physical heart stops, your emotional heart needs attention if your emotional heart is interrupted, so it's heart-to-heart connection, and it's connecting, empowering, revitalizing, that's the C, and the P, and the R.
And it's very good in terms of healing from trauma because it addresses alienation, lack of voice, and emotional numbness, each one of the factors does.
And our model, what happens when somebody experiences trauma is that they lose contact with their heart and with other people's heart, and go into a state of monologue.
Actually drawing on a conceptualization from Finland of open dialogue, and the goal in people's recovery very much is connection, empowerment, revitalization, so it's reconnecting with people and independent living centers can do this very well, without labeling people.
And you learn through this training that we do to emphasize nonverbal emotional communication as well as the blue verbal communication, so it's, these are, in your writeup, you'll see five central intentions, we call them, and you'll see they are the, opposite of counseling.
Mental health counseling actually interferes with people's recovery because it separates people emotionally, and it is oriented towards fixing when really the person needs to learn empower themselves.
And it's good not to come in as an expert but to come in and say, we don't know what's best but together we'll discover it and then you can actually be in the present moment and that's about a 5-minute overview.
Brings us to Mike.
Thank you very much, Mike.
MIKE BACHHUBER: When we were planning for this, we wanted to make sure that tool was covered because we thought it is something that can be very useful at centers, so I'm supposed to do a presentation on the history of IL, leading into confronting fears and prejudice, and I think we have about 25 minutes to do that.
So we'll, we'll have enough time, but I'm going to kind of slide through the slides rather quickly.
I think most folks in IL have heard a lot about the history of IL.
We talked about it a little bit in the earlier session with the time line, so I, I don't feel like I need to go through all the details, but please, if you need me to stop and talk about something, we'll do that.
So you know, we drafted this partially to draw the parallels to, trying to figure out how the control works and obviously I didn't do that right.
Okay.
There we go.
So this was mostly covered through the time line.
You know, we talk about Ed Roberts a lot and I think a lot of that comes from that story encompasses a lot of the values that we think of when we think about IL, and I think most of us, who are in IL, have heard that story, and understand that.
We also started seeing rights being formalized in the 1960s, the Architectural Barriers Act was probably the first civil rights law, primarily dealing with people with physical disabilities.
Access to transportation was very important early on in the movement.
Then the, this whole, we took what was really a step forward and I think is still recognized as a step forward today, to another step in 1971, that I think a lot of liberals thought was a good thing, and today we're trying to figure out how we get out from under the whole idea of sheltered work separateness for people with disabilities.
Back to the activities around the Rehabilitation Act, 1972, there was a draft of the Rehabilitation Act that would have provided the first civil rights law that broadly affect people with disabilities, difficulty getting it through Congress.
There were demonstrations around the country.
More of the accessibility, accessible transportation, activities, and then we saw the Rehabilitation Act was actually passed in 1973, over the veto of President Nixon twice, and again, this was the movement of people with disabilities, coming together around the country.
Another civil rights law, 1975, education for all handicapped children, trying to put some teeth in the Rehabilitation Act, another series of demonstrations around the country, included sit ins at government buildings for about a month until they got the secretary of health, education, and welfare to sign regulations.
In this time line, I mentioned Atlantis Community a couple of times because a lot of the civil, we, when we think about the civil rights, we tend to think about the Boston center and some of the things that happened there.
We think about the Berkeley center, and things that were happening in California.
But folks in, in Denver, formed the Atlantis Community specifically to promote rights of people with disabilities.
The 1978 amendments to the Rehabilitation Act, actually created the centers for independent living program for the first time, and created the National Council on Disabilities.
Then centers started being formed.
In 1979, the first major case on the civil rights provision of the Rehabilitation Act was Southeastern Community College versus Davis, talking about reasonable accommodation.
And then in 1983, ADAPT formed around accessible public transportation, kind of more activity in the '80s resulting in air carrier access act and Fair Housing Amendments Act to address civil rights in other areas that weren't covered under the Rehabilitation Act.
Tech Act, 1988.
Finally, kind of coming together with the ADA efforts, '88 through 1990, passed in July of 1990, and now we're getting ready to celebrate the 25th anniversary.
In the '90s, a lot of the work was around getting some enforcement of the ADA, and we saw a lot of positive things happen for access to systems, access to services.
One of the things that we didn't see, and I was talking with someone this morning, we, the ADA, The Americans with Disabilities Act, and people, how much has that done for people with, in our group, and I jokingly referred to it as the Americans with other disabilities act, because a lot of the things that really were intended to remedy, to have equal rights in employment, the equal rights in government services.
What ends up happening a lot of times in the court cases is either they were finding that someone claiming mental illness as a disability, it wasn't the disability, the courts were saying, or they were saying that the problem isn't their disability, it was their behavior, and the ADA doesn't allow them to have bad behavior, so, I mean, that's been one of the real short comings in civil rights for people with psychiatric disabilities, and a lot of times it doesn't get a lot of discussion.
If you're just stretching
AUDIENCE MEMBER: Only stretching.
MIKE BACHHUBER: Okay.
Go ahead.
DANIEL FISHER: The other problem with ADA with psychiatric problems, is you have to disclose in order to get coverage, and of course, as soon as you disclose, then you have the whole problem with discrimination and prejudice and they would never say it's because, you know, of stigma or discrimination, that they're asking you to leave, but unless you can trust somebody who, you know, supervisor, you're not going to get coverage because you don't get coverage unless they know you have a disability.
So, as long as there's such stigma, discrimination, you can't legislate against that.
That's the problem.
MIKE BACHHUBER: Right.
So the community integration requirement has sometimes been effective.
We sometimes have been able to get access to community services, but again, that has been not as clear with people with psychiatric disabilities, as with other disabilities.
I, and one thing that I did want to cover, NCIL, I think, has recognized on and off it's been an issue, and our community in general has recognized on and off that psychiatric disabilities has been an issue.
Justin Dart did a session at the NCIL conference 21, 22 years ago, specifically to try to bridge this gap between the consumer survivor community and the IL community, and some of the people that Dan mentioned in his history presentation were actually part of that.
I know Judy was part of that, as well as David Oaks and a few other people, and a lot of folks in this room probably know who Tom Olan is, he's been around taking photographs at a lot of IL functions over the years and had some really good photographs from that conference that I was able to see.
And it started to bridge the gap but there were still a lot of people in the consumer survivor community that had tried to work with the cross- disability movement and had bad experiences.
And I still run into folks that talk to me about things that happened 20 years ago, and left a bad taste in their mouth.
So that's one of the barriers to working together that we faced that is more than, you know, we started touching on.
But that other issue of the kinds of discrimination that the movements have identified as most significant, I think, also came up, and as a result of that, NCIL passed a resolution in 2006 to create a mental health Civil Rights Subcommittee and recognizing that the issues that we faced tend to be very different from people with other disabilities and I see Ruthie trying to jump in here.
So go ahead.
RUTHIE POOLE: Sorry, Mike, if you don't mind.
When you said that, it resonated with me 20 years ago, because something happened five years ago that still enrages me, about an ADA celebration.
That someone in, what it is when our allies hurt us, it hurts that much more.
I'll be perfectly honest, it was a leader in the IL movement who did something really outrageous five years ago in Massachusetts around the ADA celebration, to my community.
And so when providers hurt my community or say outrageous things it doesn't bother me nearly as much as when our allies, our brothers and sisters with disabilities do stuff.
And so when you say that 20 years ago, those hurts can still be pretty damn raw.
MIKE BACHHUBER: Right.
Yeah, and so I wanted to, this committee has been around now for almost a decade, and has been working within NCIL on some of the issues that have been important, and has realized that we have allies in the consumer survivor ex-patient movement with whom to work, and trying to draw those bridges as well as work within the IL community to capitalize on our strengths.
Right now, the chairs of that subcommittee are Krista Erickson and Shoshanna Fawley, Krista from Illinois and Shoshanna from Arizona.
If folks are interested in working on mental health civil rights, I told them I'd give a plug because it is important to do that kind of work, but I'd be also happy to talk to anyone who is interested in that.
And I think this is kind of leading into the, the next section on, on confronting fears and prejudice.
AUDIENCE MEMBER: Can I ask you to just, for the sake of us that had never heard National Center for Independent Living referred to as NCIL.
MIKE BACHHUBER: I'm sorry.
Sure.
It's National Council on Independent Living.
It's one of two national organizations that represents independent living centers, state councils, and others around the country.
NCIL, National Council on Independent Living, was founded in 1983, and they're based out of Washington, DC.
There's another organization based out of Arkansas that's called the Association of Programs for Rural Independent Living or APRIL and NCIL and APRIL are two of the three partners in IL-NET that is putting on this presentation.
AUDIENCE MEMBER: And the funding for NCIL, is, does that come from the same place that SILC comes from? 
MIKE BACHHUBER: NCIL is a membership organization.
NCIL and APRIL are both membership organizations and are funded through memberships.
They also both have some grant funding.
And do activities for fee for services, but if you want to talk about the organizations in more detail, we can do that but outside of the regular curriculum.
AUDIENCE MEMBER: Distinguish 
MIKE BACHHUBER: But I did want to at least give you some general information.
So Kenny, did you have a question now? 
Can you use the microphone? 
AUDIENCE MEMBER: At the very bottom it talks about 21% of all SSI disability recipients come from mood disorders and general, I'd be, it would be interesting to see numbers for SSDI are, because often, I know it's a bit different but often it's based on some other elements.
I don't know if just people get it like, early retirement.
Kind of shows maybe how well off they are, or how, the resources they have that we can see.
MIKE BACHHUBER: You're talking about this slide, the information 
AUDIENCE MEMBER: Very bottom.
MIKE BACHHUBER: On numbers, people with disabilities, 21%.
Gotcha.
And that's something that I threw in.
One of the things that we wanted to talk about is within disability, how common is psychiatric disability? 
And so that information came from a Social Security report, 21% of the recipients of SSI are classified by Social Security as being in those, in one of those two diagnostic groups, which encompass probably most of the people who get SSI due to so-called psychiatric disability.
DANIEL FISHER: The figure I've seen is 40%, psychiatric disability figure.
AUDIENCE MEMBER: Can't hear you.
MIKE BACHHUBER: Your mic dropped.
DANIEL FISHER: 40% is what I've seen for psychiatric disabilities.
So I think it's maybe those two represent 21% but there's another 20%, apparently, that have gotten, have been designated psychiatric disabilities, so it's almost 50%.
MIKE BACHHUBER: And I think that's, that's correct.
It's discrepancy of the way Social Security measures disability, it's kind of convoluted and it's very set along medical diagnosis models, but it tends to put all neurological conditions in one big pot, and then separates out various kinds of so-called mental disorders.
I think the key thing is probably from a number of data that I've looked at, about 50% of people with physical disabilities or sensory disabilities also have long term mental health struggles.
And so when you combine all of the groups together, it's a very common experience for people with disabilities.
Okay.
And I think we kind of -- AUDIENCE MEMBER: I wanted to add one.
Since you brought up Social Security or the SSI and SSDI number there about the percentages, I think it's significant, since we're talking about a independent living and employment as part of that, you know, one number that is, like, probably one of the most stunning numbers that I've heard of all the things Social Security reports out is, and this is a new, this is a new report, as of 2010, I think it is, that one, 1/3 of 1% of people who are currently on, and I'm, I hesitate to say SSI and SSDI, but I'm just going to, like, lump those together, actually get off of 
DANIEL FISHER: I've heard that statistic too.
AUDIENCE MEMBER: Less than 1% but they have it down to one half of a third, or 1/3, 1/3 of 1% of people that are on SSI get off of SSI.
And in terms of the significance of that, in the independent living movement, I think is really palpable, you know, because, you know, all the things you're talking about in terms of stigma and, you know, how do I do this? 
And you know, how to move forward into more recovery of your life, you know, financial support and financial, continued financial support is, like, a really important discussion to have in all of this, and also supported employment and where does that, where does money come from for supported employment? 
Your caution about not wanting to take federal money to do that, and at the same time the dollars that are put into support, you know, attempting to get people employed, it's an enormous amount of money across, somewhere around five federal agencies, I think there is a deeper conversation that has to take place in order to address independent living in a way that you all are discussing and I really fully embrace the things you're saying, but the part about money is so critical to, you know, the actual recovery into independent life.
MIKE BACHHUBER: And there are national groups that have identified that whole disability process and the way it works as a problem and are working to reform it.
Basically, in a nutshell, people spend five to ten years getting a determination that they are permanently disabled from doing any work that exists, and then it's hard to get them to turn around and back off and start saying that, yes, I can go back to work.
I am not, despite the fact I spent five years telling Social Security that I'm permanently disabled, I have recovered some of my ability to function and am doing that, so I think you're right, that it does require a whole separate discussion, and that whole separate discussion is going on.
I'd be happy to talk to you about it, but I think it's, it's not going to, we're trying to get into lunch here, and 
AUDIENCE MEMBER: I don't need to talk about it.
I want to make sure it's on the record, the whole ticket to work movement and all those things are the real drivers for being able to claim that you have a, you know, a life-long disability, and at the same time that you can work and all those things are being discussed and brought forward with consumers driving those, you know, those, those narratives, those conversations.
I just didn't want that to be left out of this, because it's so important in the whole, you know, dispelling stigma part of this whole business.
DANIEL FISHER: Let me mention something about the money.
You mentioned the federal money.
Where the problem is around rights.
Where it's a problem is around advocacy.
It's a problem around, if you want to advocate for people being more independent, and not so much a problem about getting supports for housing or for employment.
But it's a problem around the treatments that are imposed upon people.
So if you, you know, if you want to argue against outpatient commitment, but you're getting federal money, you may lose that money pretty quickly.
So it's, it's more in that area of advocacy that I was referring to.