SARAH LAUNDERVILLE: So I'm going to talk a little bit about providing, that was such a tease, I know, I'm sorry.

Providing core services to all consumers, and a little bit about joining the independent living movement, so my experience that led me to joining the movement really came you know, out of college, had a break, and had parents who really didn't know what to do about any of that, and kind of started down that path of trying to navigate the whole system, right, and so doing the best they could.

They got me psychiatrists.

They got me doctors.

They had me hospitalized.

They tried to figure out all of those things, and so I entered into a whole new world that, that, you know, I really didn't think that I would enter into, through that process got kicked out of college, didn't understand my rights under the Americans with Disabilities Act, you know, this was just a couple of years after the ADA had been passed, so kind of in that group of people that, you know, there was a law but really no understanding from universities, from employers, all that sort of stuff.

Ended up my journey into Vermont.

I had a choice, my choice was, I was going to go to a group home.

That was not the choice.

The choice was, I could go to a group home in Massachusetts and I'm kind of sad I didn't now, considering all these awesome Massachusetts people, right? And that was for all women and there was a group home in Vermont that was coed.

I chose Vermont, for that particular reason.

So I didn't have a lot of information about what that was going to look like, what, you know, who the people were, other than men and women, and that's how my journey kind of began.

And I lived there for a while.

Case management services, all those sorts of things, and lots of things and different labels upon me.

I tried to kind of get out into the work force, and was fired from a job because they found out that I was living in a group home and had a disability.

I was working with a, at a preschool and they didn't think that folks that had psychiatric disabilities with my particular label should be working with young children, so there was a lot of oppression still, right? A lot of things that led to my experiences of joining our movement.

So I lived, my case manager's best bet wasn't to kind of help me navigate another employment opportunity.

It was to apply for benefits, and started my journey.

I got benefits in six months because I had a lot of that documentation, said I had a disability, and lived on benefits for a few years.

But really wanted to, and felt like I could work a couple hours a week, at least, and years later for independent living center and to be a personal attendant for eight hours a week, and I thought I could probably handle that.

And so I, I was granted an interview, very snowy day, as many are in Vermont.

And I went in, and was met with folks with various disabilities, describing not only the center, what we did, a little bit about themselves and what their personal needs were going to be working together with, and I found myself telling them pretty quickly that I was living on benefits and telling them a little bit about my story, and I, and I kept that pretty close to myself, generally, because my parents always said, you, don't tell anybody about your mental illness and don't tell anybody what's going on inside you because they're going to judge that.

I had experience, right? I had been kicked out of a college.

A very public, humiliating experience.

I had been hospitalized and had a lot of really horrendous experiences through that process.

And I'd been fired from a job, so I was very guarded, and, to find myself in a position where I felt comfortable with people, really for the first time comfortable enough to share parts of my story that I was very guarded about was very, like, I've come home.

There was this sense of coming home.

It was a very welcoming experience.

So part of my joining that movement and coming in through that door as opposed to maybe the psychiatric survivor movement, which eventually I learned a lot about, was, is how I relate to being part of the movement today and in Vermont, we, although there had been experiences within the center, and I'll share a little bit about that, around psychiatric disabilities wasn't necessarily the, you know, top disability, and we talked a little bit about that.

I felt very welcomed at my center, and I think that that's number one key take away, is that if our centers aren't welcoming, the moment people are walking through the door, then we're not doing our jobs.

We're not thinking through how to really be inclusive with folks with psychiatric disabilities.

And then learning the commonality we have as a movement with people with disabilities was incredibly empowering to me.

I'm going to take you through where I see some of those commonalities today.

So, so we have a slide around the Center for Independent Living, means a consumer-controlled community-based cross-disability, right? Highlighted.

Nonresidential private, nonprofit agency for individuals with significant disabilities.

Regardless of age or income, that is designed and operated within a local community by individuals with disabilities and provides IL services, including at minimum, independent living core services as defined in Section 7(17), and so we highlighted cross-disability, right, that this is, this is what we are to do, as a Center for Independent Living, so besides, are we, we might not be doing a good job with it, we might be doing a great job with it.

This is what we're required to do if we're going to accept federal funds, so it's really important to know.

I talked a little bit about, in our beginning, this isn't what we were doing, right? 

Our bylaws didn't say this.

Our bylaws, say that we were serving folks with physical disabilities, and so that had to change.

And from my personal experience, when I came through the door in 1997, I, you know, kind of moved into different jobs along the way, so I was a personal attendant for a few years, and then I moved into providing information referral services, and that's where I really got a breath of, you know, information about what are the calls, who are the people that are coming through our doors and what, what is the information that they're really seeking from our center and really got some great peer to peer experiences around to that.

But there was not a huge focus at that time in '97, around different advocacy issues, around psychiatric disabilities and there's this great guy that, back then, I don't feel as old as I'm describing myself, but back then we didn't have internet at our computers, right, so we had one public access computer, and this, this guy who was really big as a homeless advocate, and psychiatric advocate in our community, Morgan Brown, I think Dan might know Morgan, he gave me a schooling that I needed.

Right, he talked to me about ECT.

He talked to me about, you know, those experiences I had around forced medication.

He was relating to me in a way that others were not relating to me and it was a wonderful experience for me.

And it started allowing me to be able to really talk about some of those advocacy issues that we should be rising up in our centers.

That's what we do.

We're out there advocating all the time, right? So we should be rising up all the different issues.

So I think that consumers or peers, we call folks peers, I must have been following some model when I wrote this PowerPoint because we never use that word either.

Regardless of disability or diagnosis, we have shared experiences, we have shared stories.

We have a shared history, a shared philosophy, shared barriers and shared pride.

Right? 

So we, who cares about our disability specific? Like what that is, or diagnosis.

This is what we share.

Right? 

So I want to talk about experience first, right? So knowledge or mastery of an event or subjected gained through involvement in or exposure to it is an experience.

What are some of the shared experiences we have? I'm going to start by giving you a little cheat sheet.

I think some of our shared experiences involve discrimination, different medical systems that we're coming in through or using, social programs systems, dependency, different institutions, nursing homes, hospitals, group homes, prisons.

Different stereotypes that are labeled upon us, or that we label other folks with.

We're often treated like children.

And there's support services that we, that we use, that we depend on, that we want.

What other shared experiences do we have as folks? You can shout into your microphone.

Or talk into your microphone.

AUDIENCE MEMBER: Poverty.

SARAH LAUNDERVILLE: Poverty.

AUDIENCE MEMBER: Loss of power over our own lives.

SARAH LAUNDERVILLE: Loss of power, right.

AUDIENCE MEMBER: Segregated education.

AUDIENCE MEMBER: Segregated education, awesome.

AUDIENCE MEMBER: Discrimination.

SARAH LAUNDERVILLE: Yeah, discrimination for sure.

Keep thinking about this.

You know, writing them down.

What are those shared experiences? 

If you're having a hard time figuring out programmatically how to describe, how we should be rising up folks with psychiatric disabilities in our centers, think about how we share experiences, to talk about that openly.

We also have a shared story, so a story is an account of past events in someone's lives, a situation viewed in terms of information known about or similarity to another.

So what's our shared story? 

We have some shared leaders, Ed Roberts, talked about yesterday.

We did not talk about my friend Judy Heumann yesterday, I want to give shout out to her, who is just an amazing advocate, woman.

When Mike was talking about 504, California being passed, if you Google searched Judy Heumann in 504, there is some awesome video that you should see as a young advocate fighting for her rights around that.

We talked about Howie the Harp, and we talked about Judy Chamberlin as well.

Another interesting thing to me is, in the DVD, oh, my gosh, lost name of it.

Who is going to help me in the crowd? 

So, okay.

Lives Worth Living, thank you.

I love how I give no details, nothing, and you just did it.

In Lives Worth Living, what is interesting, some members of our movement, see Judy Chamberlin in that video, see her as a person with a physical disability, right? 

At the end of her life, and you see her there, and so some of the folks didn't really know that there was this real strong connection and that she really started out in the survivor movement there.

We have some shared national groups.

NCIL-National Council on Independent Living, ADAPT, NAPRA, National Association of Protection Rights Advocacy.

The National Disability Rights Network, the National Empowerment Center.

We have a shared story, away from the medical model towards recovery, peer support and independent living.

From institutions to independence.

Part of our story really includes people seeing some of us as super heroes or inspirational.

We have these shared stories around puzzle pieces, right? 

Some of us think that the autism movement really shouldn't be putting us as puzzle pieces and some of us have a story where that's really rising us up.

So it's all part of it.

And in our movement, we have a shared story around inequality within our movement, right.

Around race, sexual orientation and other oppressed groups, gender identity.

I was thinking when Ruthie was talking about, we had a workshop at the NCIL conference a couple years ago, rising up the voices of the LGBTQI community and around the room after that conference, after that workshop, I don't know if folks were there, there were women talking about being a lesbian and that they weren't out in their Center for Independent Living because they were too afraid, so taking a moment around cultural issues like that is really important when we think that we might be really inclusive, we might not be, right? 

And that's true for folks with psychiatric disabilities as well.

Any other shared story that folks want to shout out real quick? 

So history.

The study of past events, particularly in human affairs, and so what's some of our shared history? 

Shaming.

I have to say when I was rereading this last night, somehow when I was writing this slide, I got really negative.

There is a shared history that's really positive as well.

But I was, like, whoa.

Sterilization of our people, euthanasia, institutionalization, segregation, we have been experimented on, we've been hidden from society, right.

Secrets are kept and not brought forward.

Let's talk about some of the positive examples of our shared story or some other negative ones, if you want.

Throw something out.

RUTHIE POOLE: I think very often we have to, people in the cross-disability movement have a tremendous sense of humor, because things happen that you just have to laugh.

You could cry or laugh.

And I usually choose to laugh, so I think, at Northeast Independent Living Program, the 18 years I worked there, I had so many laughs, and so much fun.

And it was cross-disability.

We'd, like, you know, comfort level we'd tease each other about our disabilities even and that's a really high comfort level when you can do that cross-disability.

But, like, they made me roar.

They were, my co-workers were hysterical and I just realize that with, with great pain brings great joy, they say, and oh, my God, we had fun, so I think that's a really big one.

SARAH LAUNDERVILLE: That's awesome.

We have that same thing at our center, and one guy came in one day, we have no idea who he is still, and he came in started playing a trombone in our conference room.

We were cool with that.

It was providing some good entertainment.

I think he was just waiting for the bus.

Go ahead.

AUDIENCE MEMBER: After embracing that shame, you have a chance to breathe.

And relax.

SARA LAUNDERVILLE: Yeah.

Great.

So we also have a shared philosophy, right? 

So philosophy, the study of the fundamental nature of knowledge, reality, and existence, especially when considered as an academic discipline.

So what some of our shared philosophy.

I think it comes to peer support, recovery, empowerment, self-help, autonomy, overcoming barriers, pride, equality, full inclusion and independence.

Anybody want to add to that list of our shared philosophy? We also talk about our shared barriers, right? An obstacle that prevents movement or access.

I think when I came into our movement, barriers, that's what I recognize, that's where I was.

I think it was the easiest thing for me to really understand of how as a cross-disability rights movement that our barriers are actually similar.

And so we have some shared attitudinal barriers around disability.

Communication barriers, employment barriers.

Physical access barriers.

Transportation barriers, housing and recreation, right? So we have all these barriers that we're working together, and that, and that's what allowed me to really find who I was within the movement in those early days, and rally with folks cross-disability to be able to fight against some of those barriers that I was experiencing.

Anybody want to add to that list of barriers? Okay.

Lindsey? 

AUDIENCE MEMBER: Yeah.

I mean, I think that a lot of people who have gone through particularly the medical systems a lot have a lot of internalized ableism that you kind of have to get over, so I think that's a big part of it too.

SARAH LAUNDERVILLE: Yeah, absolutely.

And then I, I think that we have a shared pride, so a feeling of, I'm sorry.

Go ahead.

AUDIENCE MEMBER: Relationships.

SARAH LAUNDERVILLE: Yeah.

Definitely.

Barriers around relationships.

Right? 

Any others that folks wanted to say? 

Parenting.

AUDIENCE MEMBER: Parenting.

SARAH LAUNDERVILLE: Did I say it out loud? 

Okay.

Thank you.

So and then we have, I think a shared pride, a feeling or deep pleasure, or satisfaction derived from one's own achievements, the achievements for those whom one is closely associated with.

This is where I just got excited about being a part of something bigger than myself.

You know, we have slogans, we talked about, nothing about us without us.

What other slogans do people say to get you jazzed up in the mornings with your groups? 

AUDIENCE MEMBER: With me, not for me.

SARAH LAUNDERVILLE: With me, not for me.

AUDIENCE MEMBER: All means all.

SARAH LAUNDERVILLE: All means all.

It's really weird being up here.

You can't tell where the voices are coming from, and I do hear voices in my head, so it's confusing.

Different songs, right? 

So I think when I went to my first ADAPT action, do folks know what ADAPT is? 

Sort of civil disobedience besides Mike in the room.

So Mike's job is to organize for ADAPT, the next ADAPT action that is coming up, so we do direct action out there.

And generally in DC, but we've had some other, you know, fun trips out, and what I found through direct action, when you have a really awesome songs, when you have ways to really bring people together in that group when you're doing direct action.

We just did an action in Vermont, part of VCIL, one of those founding groups of human rights council.

We call ourselves, sounds really fancy, we're not.

But we're made up of worker rights and migrate justice and environmental rights groups and across the board, if you can imagine, and we come together, and not fight for the crumbs of the budget, and we really work together to raise up our collateral voices and so we, we like teach people songs and so as we're walking through our very small state house, which has no security checkpoints as of today, we're able to, like, really bring forth this message, and I think it's great.

And I will say that in terms of wellness, the people who don't sing well and the people who don't play instruments well are the ones that should be doing that.

That's going to help your wellness overall.

RUTHIE POOLE: I think you're right.

Many of the songs that we use are songs from, you know, old spirituals.

We shall not be moved, really fits the disability rights movement.

And I'm not going to sing it for you because I sing really loudly but badly.

SARAH LAUNDERVILLE: That's great.

So civil disobedience is part of our shared pride, I think, and so if you want more information, talk to Mike, I guess, after that.

Our personal stories, learning to talk about what's happened to us within the systems, out of the systems, within our movement, so that we're really pushing forward all parts of our movement.

Social media, you know, hash tag disability pride, we had a big wonderful conversation around Ferguson after that, and we have hash tag gen ADA for folks that want to talk about the youth movement right now and really getting on Twitter and getting on Facebook and getting on the social media to be able to really connect.

After we did some advocacy work around involuntary commitment last year, two years ago at our state house, we started a mad in Vermont page to mimic the mad in America page and allows for our closed group discussions around really connect with people who are across the state.

So connectivity and membership.

Any other pride that folks want to talk about, or put up there? So one final thought.

So when I was starting to work at VCIL, I was walking down the hall in my center, our receptionist was on a phone call, slammed down the phone.

As I walked by, she said I hate people with mental illness.

I stopped, said her name, and she said you know what I mean.

And there are two parts I want you to take away from that story.

One of it is, yeah, that was hurtful.

All of those things that you think about when you think about language and talking about that.

But it also was a moment for me to step back and think, okay, am I going to go off on the you screwed up line of, you know, thinking that you should really refer to me as this or that, or am I going to find out why? 

And we talked for a while.

And I learned to have empathy where she was coming if and she learned to have empathy of where I was coming from, that we had shared experience in that moment.

As a woman with cerebral palsy, she had been sterilized, she had been treated like a child her entire life, including her professional life besides working at our center, and she often was met with people who were rude and judgmental on the phone, right, so people call our center for the first time and don't get what they want or need, then there's this, this stuff that can come at you, and so I started to understand, okay, this is where she's coming from, and we were able to have larger conversations about that and look at our shared experience around that, and I think, I think every moment is a learning opportunity like that.

It doesn't mean that I think it's okay that she yelled that, right? 

It doesn't mean that that was an okay moment, and in some situations, I'm going to do better at calling someone else than in other, calling someone out than in other situations around that.

But you can always come back to that.

You can always take those opportunities, and like in all oppressed cultures we know, it doesn't need to be the person who has that psychiatric disability that does that.

If, you didn't hear Ruthie screaming.

We need to collectively call people out on things like that and then get deeper.

Don't just get to debate mode where you're at each other but get to that dialogue, get to why, you know, we're at that space.

Okay.

So we have hopefully a couple of minutes to take some questions, finally.

Go ahead.

AUDIENCE MEMBER: I think as we're talking about this topic, it's important to recognize the differences and the challenges that we have.

You know, if you come into a center and you have a physical or sensory disability, it's pretty apparent what you need.

And you can begin that conversation, but when folks come in with a mental health diagnosis, it's a dance sometimes to try to figure out how we can help you and what you're looking for.

And you also have choice among the, I mean, the idea of what you want to disclose.

You wheel in in a wheelchair, you're disclosing, you have no choice.

But if up come in with a mental health diagnosis, you may or may not want to disclose.

And it is entirely up to you.

We're there to meet your need regardless of what your disability is.

RUTHIE POOLE: You know it is interesting, cause when I worked at Northeast Independent Living Program, two of my co-workers had MS and I would never know they had a disability except the air conditioning was really, really cold.

And so that's what gave me the hint.

We talked about our disability.

But it's not just, there's lots of hidden disabilities, certainly multiple chemical sensitivity.

Other disabilities.

What I always say, it's really easy, you just ask, how can I be of assistance to you? 

I mean, that's what we ask people with physical disabilities.

That's what we ask people who are, have any kind of disability.

People who are Deaf and lots of folks who are Deaf we know don't call themselves disabled, it's Deaf culture, but they do have access issues, obviously.

And you just ask, I don't want to assume that I know because you're coming in a wheelchair that you want to ask about PCA services or a ramp in your house or something.

Because maybe that's not at all what you want to talk about.

So I think there's no difference there.

We can't make assumptions because someone is using a wheelchair that they're about accessibility around a ramp.

Or a, more PCA hours.

We just can't make assumptions about people.

Because what I've learned over the years, is the old, my math teacher, if you make an assumption, it makes an ass out of you and me.

That's what Mr. Schlepsky said.

But it does.

And very often we don't ask, we make, you know, that's part of human nature, we're real judgmental, and we just need to step back and ask.

I love when people ask me, well, what is it you need? 

What is it I could be of assistance with? That's how I think.

AUDIENCE MEMBER: Hello.

So when people call MetroWest Independent Living Center, they generally are asked what's your disability and what would you like, so that's the first step, when they do the I&R and then the people are assigned different, you know, to a worker and during an intake, we, it's more, it's more question and answer.

You know, like, get to know the person a little more.

You, there's a format for the intake, where you go through different questions about the disability, about what their services they're looking for, about the services they may already have, or what, all kinds of things.

So you sort of explore, and I always tell people, this is what the goal is for now, but that's subject to change and the same for the list of the other form having to do with release of information.

You know, you don't have to put anybody on this, but, you know, it can always change.

JUSTIN BROWN: Another approach is that each of us is resilient and each of us has a story to tell.

And if we can just approach each human being who walks through the door, not with an assessment of what your needs are and what services we can offer, but rather, really, with that ear to resiliency.

What are the strengths that that person brings? 

And I think rather than putting us into different categories, you know, this person is in a wheelchair, and this person is in a state hospital, if we can just approach each other as human beings, I want to just tell one story about how that worked effectively, so those of us who are out about our psychiatric disability, we're losing funding this last, just a few months ago.

And all of our brothers and sisters showed up at the hearing in the state house.

And I thought they were there to advocate for their own bucket, you know, their own funding, and I was just blown away.

I was absolutely blown away, because we, who identify as psychiatric survivors spoke and then one of my brothers came up and he was blind.

And instead of talking about I need money for me, he talked about how because I'm part of this cross-disability movement, I got the support from my peers around my mental health and he talked in detail about how becoming blind, how that hit him in the gut, and you know, affected him psychologically.

And then my sister who only has hands, she has no arms, walked up, and she talked very personally about her experience, her story, and again, she needed support from peers around her mental health, even though what appeared to be her disability was the lack of arms.

And then my sister in a wheelchair came up, and just spoke about as passionately, if not more passionately than Ruthie did, about the peer movement.

None of them were limited by their disability.

Each of them spoke as a human being who had mental health needs, and if every person who walks through the door has a mental health need, we all need to be well.

We all are resilient and if we can just listen to that story, that's more powerful, I think, than anything else as a welcome, as a greeting, as a way of understanding where somebody is coming from and where they're hoping to go.

SARAH LAUNDERVILLE: I'm going to move us along, we're out of time for this section.

Write down your questions or comments, you want to be sure we rise up during the next phase.

I'd like to take a 15-minute break and have us back at 2 after 11:00, where we'll start promptly.