JUSTIN BROWN: So one of the themes that we've developed for today is just that the Vermont Independent Living Program and the Northeast Independent Living Program have a lot of similarities, but we also have contrasting approaches, and one of the things that we hold in common is Dan Fisher yesterday said 40%, the figure I got was 35.5% of those receiving Social Security disability insurance, so SSDI, live with a primary mental health diagnosis.

What we're beginning to see and we'll talk more about this as we have a pilot program called OneCare, which RNILP is a vendor for, it's a combination of Medicaid and Medicare funding and it's probably the future of sort of dual, excuse me.

RUTHIE POOLE: Future of managed care.

JUSTIN BROWN: Future of managed care, dual eligibility is what they sometimes call it.

70% of those in our region who are eligible for OneCare have a, at least a secondary mental health diagnosis, so we're talking about a lot of people, many of whom may present, you know, at your center and not necessarily be out about their mental health diagnosis, and you know, people talked yesterday about sort of the frustration that we're not out all the time.

Well, it takes a lot of courage to be out and Dan made it really clear yesterday, part of the reason it takes courage, because once you're out, all kinds of bad things can happen.

Once you're out, you can also be a force for change but it's a decision that, just like, you know, gay rights 30 years ago, you can't say those damn gays, why don't they come out of the closet? You have to create a climate where people feel safe to come out of the closet, and that's why we have gay marriage today, because people came out and it's your neighbor, it's your cousin, it's your child.

Well, the same is true with mental health diagnoses, except we're not there yet, and it, many of us are afraid to come out of the closet.

Okay.

So what we want, there's a lot of talk, when we were first developing this workshop about integration.

Remember that.

That was a big term in the early civil rights movement.

We want integration.

And so one way to conceptualize what we're here to do is to integrate people like myself who have lived experience with mental health challenges into the core services of an independent living center.

Reasons for integration.

We share a common identity as persons with disability.

We engage in consciousness raising around the strengths and needs of persons, in our case, living with mental health challenges or a psychiatric diagnosis.

We confront false beliefs and fears around, quote, those people, those people, some other person, somebody who is different who have a psychiatric diagnosis.

We create access to resources and community within the independent living centers and we share a common pool of resources, so in many ways, that is what Sarah will be talking about with the Vermont program.

Then we also want to talk about segregation.

Now, segregation is a bad term in many ways.

But we want to be clear, another way to talk about segregation is affinity groups, so that we actually do separate ourselves into affinity groups and we start with that as the foundation for our cross disability work.

It's not that we don't have allies.

It's not that we don't have shared experience and common challenges.

But we got to begin with groups of similar experience, what we call affinity groups.

It's there that we develop a unique sense of mad pride.

And you know, if you can't bring this process to your independent living program, if you haven't got people who see themselves as proud to be who we are, people who are mad, people who are crazy.

We're not trying to pass, we're trying to change the culture, not only at independent living centers, but across America.

So I like to use, so we prefer to call ourselves activists, as opposed to consumers.

A lot of IL centers still use that word consumer.

We can talk further about it, but it's not a word we're comfortable with, at least at our center, we much prefer activism.

We define equal access to mean specific things to that affinity group and this goes back to the Alinsky organizing, you know, what is it that is specific, that we can make a difference in? We can claim our power in? Access for people with psychiatric disabilities looks different than it might be for somebody who needs a curb cut or accessible apartment, but it's access nonetheless.

It's access not only to employment, which is what you all have talked about but simply to inclusion, and I'll just tell a brief story that I think helps highlight this.

So I was living as a homeless person down in Washington in the early '80s, and I met a guy named Clarence.

Now, Clarence was still living with the fact that he had been in the Korean War, and he had been hospitalized for, by the time I knew him, he had been hospitalized about 30 years in a psychiatric hospital.

He was just kind of dumped in the late '70s, early '80s, into the streets and was living there.

He, he believed and could see troops.

He was a general.

He was leading troops through the streets of Washington, DC.

Now, I didn't try to fix Clarence.

I just tried to be, you know, his buddy, his friend.

And what happened over time was three things.

One, Clarence started to feel a sense of community.

We had tents, out on the lawn in front of Lafayette Park and Clarence came to live with us in those tents, so he had a sense of community.

Second, there was a drop-in center where Clarence decided, you know, every person who walked into this drop-in center, he was going to volunteer, he was going to make sure they had a clean towel, a cup of coffee, and he was there to watch out for people.

And over time, as Clarence's life became meaningful, he had community, he had a valued role in that community, the troops just kind of faded away, without medication, without counseling, without all the traditional mental health services.

Well, that's what I mean by access.

So what do I need as psychiatric survivor? I need access to community.

I need access to a meaningful role where I am viewed as a contributor.

It doesn't have to be that I'm paid money.

Great, I'd love to have enough money to survive on, but I need that value, which money represents, a valued role in our culture.

I think one thing we just want to say about affinity groups is that we develop our own leadership, and we resist outside leadership, so my recovery learning community, we, you know, have an executive director for the Northeast Independent Living Program, but in some ways, we fight for our independence.

We fight for our right to be not just another worker in an independent living center, but a separate community with a separate identity and with our own 100% consumer-controlled organization.

So I'm just going to wrap up here, and say that affinity groups form alliances based on shared values in a time shared need but we retain our separate identity, our separate leadership, and our separate organizing structure, and more than anything else, that phrase from the cross-disability movement is nothing about us without us.

We learned that from the people who came before us, but we embraced it, and made it our own.

Thank you. [ Applause ]