AMINA DONNA KRUCK: Throughout this you are getting graphics. You are getting some PowerPoint slides. You are getting some techniques which are things that you can take and add to your repertoire. Which ones ring your bell. And you have access to us later if you kind of remember and don't and wanted to know how to actually use it. So this is in the purview of pulling it altogether to help you think about that. So I have a few questions and thoughts that I wanted to say before I get into my presentation, which is one of the questions was a question about oppression causing disability. And what I mean by that, if oppression is part of a political system that has a system that basically men's jobs are to work until they drop or kill or be killed, that's the main job for men in this culture. Right? Am I right? Accepted. I know it's now 2015 and we don't all buy it, but that's kind of the political, independent, American dominant culture perspective. And so that causes disability and unsafe working situations, undue stress which can cause, you know, drug abuse and alcohol abuse. Feelings of failure if you are not fitting into that. Suicide. Like what happens whenever the economy drops? Very successful people that lose everything, you know, want to jump off bridges. So that's what I mean by oppression, the health access in a culture like that, there are people who are the winners and the losers. The people that get access to resources and the ones who don't, which cause health problems or lack of health care to be able to take care of health problems that are going on. That's what I meant by that; does that make sense? Yes. And let's see. So I was really thinking about this justice piece and I was talking with my friend Valerie, I mentioned to you before. She was one of my main allies. First I guess I will address allies. What is an ally? I did not really define ally. Ally to me is somebody that's a support person that gets what you are about and gets what you are doing and supports you in your efforts. That's what I consider an ally. Does that work for people? So an ally. Often when I am talking about it, we are talking about somebody who is not in your same target group of oppression. Somebody that is outside. They decided to join you because of a relationship that they have with you. And they get what you are up against and they are in there with you and you can count on them. And you can count on them to remind you when you forget who you really are and you are buying those oppressive stereotypical messages about who you are. As a person with a disability, as a women of color, somebody who identifies as lesbian whatever those target oppressive groups that get marginalized and get put in less than human and totally valuable whole perspectives. But we also are allies to each other, and I do a lot of work, disability oppression theory work that I do, I also call my workshop slash attitudinal barriers. Some people love the word liberation workshop, some people come because of that, and some people come because of the word attitudinal barriers, so I use both because I want various languages or ways to describe stuff to attract more than one frame of mind person. So one of the main reasons I do this is so we don't abuse ourselves with these concepts. And I think it's key to leadership development, because what's in the way of somebody being a leader is they don't think they can do it. And so what I learned in rc was the best leaders are reluctant leaders, not the people who charge ahead wanting to be the leader, it's the reluctant leaders that have a passion or have a skill. My friend Valerie's never, well, she now has worked, actually, doing web work until her electromagnetic sensitivity got too bad. But up until the point that I met her she has never had a job. She has had a high spinal cord injury for 38 years and never had skin breakdown. I don't know any other quads in my realm that has that. She knows something about how to take care of herself and how to use attendants that most people don't know that are living with that condition, so she has something to offer somebody else. So we were talking about this, the issues that came up and everything because she just thinks so well about this stuff and so this idea of the first wave, second wave, third wave of feminism, right? We're 25 years past the ADA. We have a generation of people. I am now working with a generation of people who grow up post ADA, and their perspective and where they're ready to go in liberation is beyond where I thought I could go because they got raised in a different environment with different expectations. And that's, that's this concept of, well, you may already know that but I put this together last night, okay? They say, well, they're on the shoulders of us, this generation and what we did, and that's kind of true because we provided a different ground zero for them, and they will do that for the next generation. And so naturally it's going to stretch our thinking to go another place that starts at a different place than we started. So, does that make any sense to people or it's just me getting excited about my own brain? Having connections. Because I am excited about this. I am excited about this. I am a Sagittarius and I like to go where nobody's gone before, or just only one or two people. So I put that together, and this was Valerie's concept last night on the phone which was who never gets to go anywhere, by the way, because everything is too toxic for her. So she's amazing, and she said, Don't mistake the map for the road, and we're providing a map with three or four stops. But the road, we're all co-creators on the road. You're a co-creator. So just keep that in mind when it's like, where is the leadership training going to happen? When are you going to start with that anyway? But part of my piece is to get stuff out of the way of people being leaders, you know, the stuff that holds us back that makes us think we're not good enough to be the leader because that is the number one manifestation of internalized oppression. Is I am not good enough to be the leader. And we say nothing about us, without us, but then who is willing to be us? I mean, how many congress people have invisible disabilities and the ones that have invisible ones, they're not talking about it much, right? We just have a couple. And oh, God bless the ones that we have. So, so I thought that was really good, keep in mind that this is a roadmap but it's not the road. We're all on the road together and we're all co-creators. There was one that, one sticky pad we had that we weren't quite sure what it meant. It said, Isn't peer support supposed to help community members work through their emotional stuff? And I'm not quite sure if that person wants to say any more about that. I mean, I feel like that's kind of what I was saying is that it is just a natural part of the healing process that's going to happen is emotional stuff, but quite frankly, a lot of staff and centers are not prepared for that because they haven't dealt with their own stuff. So they get uncomfortable. You know, if you're somebody that-Okay. Here's a little exercise, hand-raising exercise, okay? How many people grew up in families where it was okay to show anger? I would say about half, more than half of the advocates, you would expect that, right? How many people grew up where it was never okay to show anger? We've got a few of those. Yeah, you're really welcome as advocates, too, by the way. There's more than one way. You can just be a really blissful advocate. That really disarms people. And how many people grew up where it wasn't okay to show fear in their family? I'm one of those. My mother would really rather piss me off than have me show fear. She absolutely trained me to be fearless, even though I'm not and I don't show it. And how many people grew up. So there were only a couple hands for the fear one. How many people grew up in a family where it was okay to show sadness? We cry in our family. So quite a few people. Maybe two-thirds of the group. How about joy? Okay. A lot of people. How about exuberant joy? Price is right joy. Oh, we only have about five of us, okay? I got taught this in co-counseling by my friend Jenny, how to be exuberant again and excited again. So those emotions you're not comfortable with, you're not going to be comfortable with other people and you're going to start patting them on the back like, the back like, hurry up, hurry up, let's get past this. You're going to divert it. They're going to divert themselves when they start to have feelings and you're going to let them, instead of maybe going back to what it was that brought up the feelings. This is different than therapy. This is just noticing the hurts coming out and letting it happen, okay? So thank God for rc because it's real different than all those years I spent getting my counseling degree, which were good in another way. So, so what I see this piece I'm doing is really helping people notice what holds people back and how to support them better. And it's not just being a cheerleader, but it's letting people stay in the ouch place for a little while and supporting them. Yeah, so that's really it. So the, and letting them, I call it discharge. It's a nice term that is not as loaded as some of the other terms, right? So the other thing I wanted to tell you is that you got in your packet some of the tools that I use. You have like an outline for what a workshop would be when I do workshops, they're usually like 10 to 3, something like that, with a lunch break. So it's kind of a basic outline that you can use to cover, and you've got pretty much the PowerPoints you need and you can adjust them as you want. You have something we're going to talk about today, commitments that contradict internalized depression, so this is a way to go deeper with people about it. You can do it one on one or in groups. Yes? AUDIENCE MEMBER: This is Jared Price. I have a question regarding the opposite of staying in the ouch place, you know, letting someone experience that, and the reverse, if the person's already in that place, how do we assist them in getting out of that? AMINA DONNA KRUCK: you know, I was a crisis counselor for three years, and I wondered if this theory would work, to let people have feelings. And what I learned as I let people have feelings and then typically they move on. The place where you're in trouble is if somebody is always stuck in the same feeling. That is not discharge. That's rehearsing a pattern. Rehearsing a pattern of anger or of misery. Often underneath anger is sadness or fear, so you, then you do up and outs. If it's time to turn it off because, you know, you got to go, you have an appointment, they have an appointment, whatever, then you do it up and out and you say, you know, great. Let's come back to this. This is important. You don't say, ooh, you know, don't talk about it. This is important what we were talking about. This is a key issue for you, maybe. But if somebody has mental health issues where they are stuck in a place, then that's a place for referral for them to get other support because this is different. It isn't therapy. And it takes a little bit of experience to, you know, judge which is which. Some of us, who has counseling backgrounds here? You know, you were trained as counselors? So a couple. Other people were trained as social workers? Not very many people were trained in either of those fields. So the thing about the social work field is they really teach you a lot about ethics and about boundaries as well as taking a personal issue and making it a community issue. I was lucky. I had support when I was going to school by a friend who was a therapist that always gave activist directions to her clients to take actions in the world to contradict her hurts. So what other backgrounds do you have, like shout out? Jared, what's your background? AUDIENCE MEMBER: History. AMINA DONNA KRUCK: History. Okay. What about you? What's your background? AUDIENCE MEMBER: Business. AMINA DONNA KRUCK: somebody at the back table, background. Special education. Over here at this table? Backgrounds? I can't hear you. Psychology? AMINA DONNA KRUCK: right. There's a useful degree. I'm one of those too. Occupational therapy. What else? Political science. Over here. Biology. So what do they know, right? They know a ton of things but they might not know this, so I'm giving some tips. This is a typical center for independent living right? Because we hire peers and so they may or may not have backgrounds that understand some of these issues so I'm trying to give you a framework in two hours. It won't be everything but we can talk more in-depth about it. As some tips about when this stuff is coming up, how to look at it from a different perspective. And some of us chose educational backgrounds or life experiences to avoid feelings a lot. Some of us are more comfortable in that realm than others. I did a lot of feelings for 20 years and I don't do as many as I used to do now. But I dumped off a ton of stuff in that 20 years for me because I had a lot of baggage, and I did different kinds of therapy, too. So another handout that you have here is disability panel instructions, and we're not really going to do this but this is a recipe that always works. So if you're someone comfortable with a recipe about how to do an awareness panel, this is a great recipe that I've used a thousand times. You can modify the questions a little, but they're very basic questions, which is what is the name of your disabling condition and what does this mean in common language? What's good about having a disability? What's hard about having a disability? So what's good always blows minds. What's good about having a disability? What's hard about it? What do you want people to know about you or your disability or living with a disability, and then if they are a person of color or they identify as GLBTQ, you can add that question in as well. What don't you ever want to hear again? Panel members love saying that question. Don't you all have something you really are very clear about right away you don't ever want to hear again? Mine is, do you have it all over your body? And I imagine them kind of doing x-ray vision, right? Or, why don't you just tell them you have a sunburn? That was another one I used to hear. Let's see. What are key supports in your life, which is really good, give them a chance to talk about technology or people, you know, people, technology, robots, technology, people. Are you willing to answer questions in the class about it? If so and there's time to ask questions, it's good to have three to five tops panel members, and you think that they would go on and on, but I always go this direction, you know, from left to right with one question first, everybody answers, then I go backwards. The next question everybody answers that way. And people, I like to let them know ahead what the questions are, and people are amazingly succinct. I've rarely had to shut somebody down. And then the really key part about this panel that's very, very powerful is then you ask the audience to tell you back what they heard. Literally, and you have to be a cop about this. Not, oh, I hear that Mike is so, he's so inspiring. No. Mike said x, x, x, x. I heard Daniel saying x, x, x, x. I heard Sheri say x, x, x, x. So if they start to interpret, well, back to the thing. So they get it, and what's wonderful is the panel members really get to get heard then and they get to clarify anything that people are hearing in a distorted manner, and the audience feel quite accomplished if they can say something they heard. So they get with it after a few tries. At first people are a little bit shy. So this is a fabulous tool that you can take anywhere. Anybody can do this kind of a panel with or without a disability background. The other sheet you have in here is a whole list of some of the words that we've come up with over the years in disability workshops about what, what oppression looks like or sounds like, you know, broken, brave, careless, can't, challenged, did it to yourself, dumb, entitled, excluded, faking it, gold bricking, idiot, imperfect, it's all the words we just love to hear out loud that people have done in a workshop. And I take this after we have gone through part of the workshop and have people to look at the internalized oppression and circle what, or add in and circle the ones that really touch them that they think they have swallowed whole and have been living. That's really not who they are, so that they know their direction, then, to liberation. They know what they're up against. They know who the monster is behind the curtain. Like, oh, so whenever it comes up that my friend who doesn't, you know, has always felt like she hasn't made enough money but has been a volunteer in a million places and mentored people in many programs starts to feel like she hasn't been a success in her life, I know where to remind her of who she really is, and this is information allies need to have. We need to clue our allies into it. Man, if you hear me doing this, call me on it. That's taking personal responsibility for your liberation. Yeah? Give that woman a mic. AUDIENCE MEMBER: This is a funny story that happened to me in the city of Pittsburg we have a lot of, I called them the town criers, people that walk the streets downtown wanting to heal everybody they see that looks the least bit different. And I had this older woman come up to me one day with a mega phone and she said, pray with me, child, and you shall be healed. And I took the mega phone from her and I said, I learned that God doesn't make any mistakes. And she literally didn't know what to say and she just walked away laughing. And I think any time you can own it and make someone think about themselves, you get a little further than if you swallow that stuff. AMINA DONNA KRUCK: that is a really good one. That's a whole topic you can have a whole group on. What to say to people when they do that kind of thing. It used to piss me off so much when that would happen, and then, you know, after like looking at this stuff for years, I'm much more relaxed about it. So woman and her child stopped me outside of the grocery store with that scene, and I just said, Yeah, great. Thank you. Listen, this is what I'd like you to pray for, for me. What would you like me to pray for you? Let's pray right now. And we did. So there is a workshop demonstration using commitments description in here, because we're going to talk about commitments later, and then just a sample evaluation. Nothing fancy but just, you know, in case you wanted it. So that's what's in your packet. So this is just a reminder about ableism and what it is that it stereo types people. It's a repeat. And, so this is so powerful because CIL's, one of the core services is peer support. So this is about how to be an effective peer support person understanding this stuff. So we provide role models and this is, when people come to a CIL, they come being one in a million to being, you know, one of many, meeting people with same disability and all kinds of people with all kinds of different disabilities and getting a perspective and getting their stereo types blown. So we're role models, we're cheerleaders, we have shared experience and understanding, a sense of belonging, as well as the other core services. So this disability liberation stuff is really powerful around how to offer peer support. And we lift as we climb, you know? The gift that goes on getting, so as you wake up, what I mean by waking up is waking up to how the person is political, then you move forward in life in a different way. You know, and you start to hold your head up high. So one of the questions was what has this got to do with disability pride? It's got everything to do with disability pride. I used to think all the time I heard loving yourself, I got given that message from a lot of different places over time, and really, what does that mean? What does that mean? And I, for me, what it means is accepting who I am, really accepting who I am, all of who I am. That's what loving myself is, you know, well, there's another definition but we're not talking about that here. Understanding ourselves better, realizing what, where our blockages are and why. It's not just that I'm screwed up and a slow learner. I've been climbing up a mountain my whole life. Yeah. AUDIENCE MEMBER: I was wondering if you could talk a little bit about are you familiar with the term micro-aggression? AMINA DONNA KRUCK: I am familiar with it. AUDIENCE MEMBER: This is like what all the young people are using these days. And that got me thinking, like, okay. I'm a Sagittarius, too, so I always have to go with that, Sheri can affirm that's true. So I really got to thinking yesterday with some of the discussions about the, you know, identifying the underserved populations and what does that mean, and you have your disability micro-aggressions, and then you have micro-aggressions that are, that are related to race and class and gender and sexual orientation, and, you know, I think where we have our strengths is being able to combat some of the disability rights micro-aggressions, like we just talked about, you know, the mega phone and tell people that you have a sunburn. And people say to me a lot, do you know how pretty you are? You know, and those types of things, like how do you work through that in your trainings? AMINA DONNA KRUCK: I don't talk about micro-aggressions in my training. I only learned that word this year from another diversity training. Because it is a new term being used by a new generation looking at diversity, so I don't address that in that way. AUDIENCE MEMBER: So it just follows kind of the more co-counseling model. AMINA DONNA KRUCK: it follows the Amina Donna Kruck's diversion and twisting of the rc model. And reading the Disability Rag for years and reading This Mouth has a Brain for years and hanging around with people and being in love with Judy Huemann, I am a groupie of Judy Huemann's. So I don't know if that answers your question. Somebody else, I think Dolores or somebody wants to say something about micro-aggressions. It would be helpful. It's an interesting concept. I just don't feel able to address it. AMINA DONNA KRUCK: so yeah, your mic is not on. Go ahead. DOLORES TEJADA: do folks know what that means? AMINA DONNA KRUCK: how many people know what micro aggression means? I just learned that word this year. So not that many, maybe a quarter of the group. DOLORES TEJADA: So yesterday when we were talking about the interpersonal oppression, one way that happens is when people do acts of aggression but they kind of cop out sideways, so maybe they're not really explicit but you kind of feel it on the inside and you know it wasn't right. And I found it's really helpful to talk about that in trainings because especially for people with disabilities, political identity around disability is really new and foreign, but everybody has so many stories of when somebody said something and it didn't sit right with them. AMINA DONNA KRUCK: yeah, that does come out during the what don't you ever want to hear again? Those kind of statements are often the micro-aggressions that people hear. Because people rarely just come up and say, you're not worth anything, although I did hear a story kind of like that recently from somebody. Instead, they say other things. You know, like I couldn't, I couldn't live with what you have or, you know. Which is kind of like saying your life isn't valuable, right? DOLORES TEJADA: And I think micro-aggressions is also good teaching place around other issues because you'll hear an LGBT person talk about something and you're like, oh, my gosh, I experience the same thing as someone having a disability. So it's often a good starting place for intersectional work. AMINA DONNA KRUCK: yes, yes, yes, yes, and one of the ways that I have, just recently we used this is we had the workshop in Arizona which was the first meeting of the minds, really, for communities and people with disabilities who also identify as GLBTQ, and what we did was show how the oppression manifests and is instituted in the system for both groups and where it intersects. And there were a lot of aha moments as I've been working with one of my co-workers and talking about this, that people hadn't put together, that they were similar messages, similar actions, and then who made it a little farther in different directions of approaching it, and the GLBTQ community has some much better polished education tools for, like we're trying to do an orientation diversity training for a health clinic, and it was much easier to find slick tools for that community to educate about issues than it was for disability. Most of our materials are still too internal of us with each other as opposed to us presenting, so that any trainer in the world could do it, not just me. We don't have much yet. We're not as far along. And we don't have Wells Fargo and Ford Company. We haven't gotten them to pay for the slick materials yet the way that the GLBT community has done, so we have a ways to go. Thank you, Stacey, and thank you for bringing that up because it is important and there is a lot of conversation about it. I just haven't used that language because it's new to me. Yeah, thanks. So realizing ableist concepts, so that fits in with the micro-aggressions, helping others get it, that the stereo types are not them either, reminding each other of who we are and cheering each other on as we pursue our goals. So we all know in this movement getting people to dream big is good. That we don't have to follow, what's that old concept, first you have to do this, then you have to do this, then you have to do that. No, where do people want to go and then you go backwards to get them the skills and the resources they need. So identifying the internalized messages, how ableism works, believing the narrative, so that is, I feel like we've done a lot of this. Not feeling worthy, feeling like a burden, low self-esteem, getting stuck, being able to not make decisions, not trusting your own judgement, getting caught in patterns of victimization. Particularly people who acquire disabilities later in life really get slammed with this because of some of the stuff that we're going to talk about in a minute. Understanding how oppression works can move people from personal to political in an empowered leadership perspective, a new sense of identity, civil rights perspective, and moving to a justice perspective. So this is all the things that bring light bulbs onto the people we work with. CILs want to empower people to take personal responsibility. To help them achieve their goals and there was a question about empowerment. You can't really empower people. You can create the soil and the water and the sun that lets them grow into empowerment. That's what we're doing. So to advocate for themselves and others, advocate for community policy improvements, become leaders in disability liberation movement and their wider other communities of interest. I feel like that's where we are now is not just within the disability community, but getting people to take leadership in other constituency places and other community places. That's our cutting edge right now. We've got get out of our playpen and move forward, and that's something the younger generation is light years ahead of some of us older advocates, I think. Learning how ableism /oppression works provides empowering perspective, a different perspective than the typical counseling or case management experience does. And, so, you know, I say here the man behind the curtain is ableism. You know, I love the Wizard of Oz. I use its analogy a lot. Where else will a person learn to identify, where else does somebody learn this if not at a center? I don't know, mostly they’re not going to learn it. Occasionally a family is really excited to meet, you know, a couple people who grew up with parents who are involved in the movement. That's very exciting to me. My generation didn't have very many parents like that. We might have had supporters, you know, like Zona Roberts was an incredible support for Ed, and I'm sure it made a difference in his life. The media, we rarely get to see ourselves actually reflected as we really are, but the, on the other side of that, we do have YouTube now where you can actually find reflections of who you are, because anybody, it's very egalitarian, anybody can be on YouTube. And so youth and people can find supports on YouTube in a way that they couldn't, but the mainstream media, not. Hidden disabilities are rarely portrayed or talked about. We are rarely in advertisements. It really sticks out when you see us there, and lack of representations in characters, news, newsletter article, I meant to say newspaper article language is still always victim of wheelchair-bound is still very pervasive in the press and in written material that's not ours. They suffered their injury at a certain age, these words that make us cringe and really send a message out about what it means to have a disability. Non-disabled actors playing disabled roles, a sure path to an academy award. There was outrage when Mobility magazine had a picture of the young man that's on Glee, that uses the wheelchair on Glee and is not really a wheelchair user. And they announced him like the disabled person of the year. Is anybody aware of that? There was all kinds of, I can see Andy Imparato just like in bliss because he loves it when people argue about things. Medical experience, patient, this is one I'm very familiar with as you can guess, the search for a cure, and if not, what happens when we're not cured? What does that mean? And a doctor's sense of identity, you know, and how it's threatened or confirmed by how we progress during their treatment. Focus on impairment as the problem, lack of partnership between professional and consumer. So the path to liberation with the medical system as a partner, so for somebody like me who was always outnumbered in a teaching hospital, having somebody with me makes a big difference when I go to the doctor. Don't go alone. It's not safe. And they act different. They educate you differently, they can take notes when I'm restimulated because I'm really noticing this guy has the most disgustingly dirty shoes I've ever seen in my life. How could I trust him with my body? But I'm not quite conscious what I'm thinking until I leave and my husband goes, did you see his shoes? You're never going back to that guy again. But, I have a friend who grew up in Alaska with Spina Bifida. Only disabled person she or anybody else she knew, ever knew. And she wanted to go to the doctor alone and she wanted the doctor to talk to her not her family and that was empowering to her. And her and I talked about that. That made sense for her, this makes sense for me. That whole expert thing. We are the experts in our body. The medical system is not. You know all know that. Anybody who has lived with something knows that. But they can talk us into believing we are not and, you know, this is my challenge, how do I educate the medical system what a mistake that is because they are just thinking we are noncompliant when they don't get it. And they don't know what all we are actually doing to take care of ourselves because they don't ask us that. Under the system which is abusive, they don't have time to do it because they have to see people bam, bam, bam. Unpleasant, frightening experiences in hospitals, children's hospitals, little houses of horrors, research subjects. Abuse. Oh the stuff that has come out now about the abuse of research on African American people is just horrifying. Horrifying and I'm glad it's coming out. I'm so glad it's coming out and they are having to own what's happened. Families. We often don't see ourselves reflected in our families. They are hurt by ableism too and I've said that before. If you have a family member with a disability, how were they treated? To look at that especially those of us, even with or without a disability because those are those micro-messages of what something not said. What is never talked about and what is not explained. Some identities can only be validated by peers through family though family can help. So this is, I kind of tried to write this out. I have been looking. This is Andrew Solomon. The guy with Ted Talks, fabulous. This is a gay man who studied families with children with disabilities. And he writes about it from his perspective as a gay man. He talks about his life of coming to accepting his own identity and what it has meant. He said the only way to ever get to LGBTQ pride is through a peer group and similarly for parents of children with disabilities. Who else understands what it's like in this culture to raise a child with a disability. Nobody can know what it is like, like another parent. And my friend that I'm visiting. Her son had emotional disabilities as a child. Very difficult to work with. Literally, they had to lock up the knives in the house. It was a really difficult time for them and it was very hard to maintain any friendships for her and her husband during that time because nobody else could understand. And as we all know, if nothing else works, the parents get blamed for things. And similarly for people with disabilities. And even within our structure, people with unseen disabilities have a sense of support and camaraderie in a way that people, that it's harder to have with somebody that has a visible disability, although some of the barriers are the same, but some of the barriers are very different and immediately, like, you can relax when somebody gets what it's like when nobody believes that you have a chemical sensitivity. They just think you are making it up. We get this from our family members and close friends. We lose friends sometimes when we acquire these things because they don't get it. So this idea we get some of our identity from our family, race, ethnicity, religion which we can push against or accept and family stories. But this other piece where we get to pride. Disability pride, we get from our peers. It's the only place that we can get it. When I hear your stories, it puts my stories in perspective and we can think, damn, we are hot. We are inspiring. You know, we do inspire, that's okay. It's good. I came up with the generation in independent living, with I just want to be a person. I don't want to have to be my disability. I moved to a different place with that. I want to take credit for all I figured out to live with this in this culture and I encourage other people to do that too. Simon says, from his experience as a gay man in these studies he did, I was reminded how isolating an exceptional identity can be unless we resolve it in a horizontal solidarity. Some identities can only be embraced in a truly positive manner through peer support. Others who understand through shared experience of oppression fosters a sense of normalacy and I put in disability pride. He put gay pride. A parent of a child with a disability can get a sense of solidarity from other parents of children with disabilities. So he has a great book Far From The Tree, that I highly recommend but I was very disappointed when I got it because it's thick book and I don't read thick books very much, cause I read them in bed and I can't hold them up. And it is so darn long, but just the first two chapters are dynamite. And his Ted Talks are really entertaining. Why this is such a good match for centers for independent living is because it helps people move from being a medical condition to a person. From being an invalid to being valuable. From victim to survivor to thriver. A personal to political. And you have to get there first before you become an activist and a leader. So you have got to get it that you are not up against yourself. You are not even up against your parents or your doctor. There is this system out there that is not working right. The definition of a disability is you cannot work. That is not working. We need a revolution around that. It is not working. People are poohing, poohing that these papers got submitted about this, this summer. We have to change that. Nothing can move forward with employment until we change that. We will never get anywhere. Abnormal to everybody is different. A new kind of normal. And celebrating difference in diversity and involving ourselves and getting involved in other oppressed constituencies. Ties into what Dolores and Stacey said. So it effects progress on personal goals. Home, partnerships. Marriage, safe nurturing relationships. Parenthood. Heart's desire realized. It effects everything. And then this issue I am a little concerned about us, and me, for huddling too much with our own kind. Effects health all the reasons it does. Is the medical facility accessible? 90% not. To this day. Not. Still long way to go there. Lack of trust with medical professionals. Inability to self-advocate. So many people don't know how to do that. I'm a much better self-advocate when I have somebody with me at the doctor's office. It's just too deep of a groove there for me. Feeling like a burden or a bother. Addictions. Avoiding uncomfortable feelings. Lack of proper treatment, lack of proper pain or depression treatment and anxiety treatment. Had that conversation last night with my friend about she's got anxiety because her attendant quit. Oh yeah, it's situational, but she is worried night and day. And it's making her sick and she can't eat and she's skinny already. And she needs to be able to get nutrition to have energy to hire and go through what she has to go through to recruit people and in this case I'm not a big medication pusher, but maybe the anti-anxiety medication would be helpful for her along with this charge in life support and other support. Oops, what was this other one? Will to live, better off dead than disabled. The will to live and we all know when people are newly disabled, that is a critical time for them, they need to meet us and know us and everything we know that. Sense of identity internalized oppression effects continued, is the ability to be resilient to cope with difficulties, protect ourselves, believe in ourselves and our value and know and use our rights. It hurts others by our internalized oppression can mean that we don't validate each other. We put each other down. We don't believe in unseen disabilities. We don't support our brothers and sisters with different issues. We don't want to hangout. We talked about yesterday that a little bit with the Wounded Warriors not wanting to hang out with other disabled people and attacking our leaders. So this divisiveness within our community. It's safer to attack our leaders than those other guys and I think we really have to watch that and really, yeah, you have to be real about what's not working. But you also need to, we need to support our leaders. We need to be allies with our leaders. And if you don't like that, become a leader yourself. Right, we always say that. Don't come crying to me if you are not advocating. So I have talked about people with unseen disabilities and what a particular stress that is. Lack of understanding. And how they need allies too and need to be considered full members of the disability community. Those needing personal assistance that pressure needing help. It's better to give than receive. Tells me I'm a failure because I think I cannot give anything. Not only do I benefit from Valerie's wisdom. She said to me last night, it's important to me to know that I'm there with you and that you are sharing with me and that I have something to give me. And she does, she always does. Really she wanted, this is from her. She wanted me to emphasize that people needing personal assistance really benefit from these concepts. She came to my support group for years, somebody met her in a store that was in my support group and she came for years and learned this stuff, so she, yesterday we were talking, like, okay. I still have been trying to figure out how to help people to be able to practice this theory. Not just do a workshop. I tried creating workshop number 2, section 2. People often come to the workshop more than once over time. But do they really have, they kind of set up the kind of support I had a privilege to in the rc community where I got to hear so many stories and I got to look at the stuff so deeply in myself. Most people don't have that opportunity and our CIL has not set up that opportunity for people. But Valerie had that opportunity because she came to my support group for years until her chemical sensitivity and electro-magnetic sensitivity got so intense and so I have to visit her when we have time together. This situation of needing caregivers and how we don't pay caregivers enough, therefore it's not easy to hire and fire and find good caregivers is really a big deal and it only matters when you need it. I see a mountain of need coming down the road with the aging of the baby boomers. I see people not looking at the need to invest in assistive technology for people losing vision and hearing. I went to the White House Conference on Aging. I don't see people getting that issue. I hear a lot of talk about long-term care, but nothing is getting done about it. And people are going to need this caregiving. It's a part of our economy. It's not a drag on our economy any more than building boats are. It is a part of economy. Thank you Henry Claypool, he gets it. Anybody know Henry? Henry has worked for the federal government for years and I can see his mark on the CMS rules. I just want to lick his face because it's so cool what he has done. Because, talk about a slow burn. You know, he and I met in an elevator one day and it was like we were both enraged that health care is seen as a drain on the economy instead of just part of the economy. It is part of our future and this is not being addressed. It only gets addressed when you need it. But we do see this wave of those in my generation of having parents with these issues. So this year when I went to NCIL and we went to talk to congressional members. I hate to do that. Talking to congressional members. Anyone like talking to congressional members. Oh my God, there's a few of you that do. I am praising you. I hate it. I feel like a used car salesman. They are going, yeah, yeah, yeah. As I do my spiel. This year almost every one of the staffers that we talked to had a relative to tell us a story about that needed a home modification, that needed personal assistance. Do you do this or that? I've never heard such interest and we had been warned by Darah Johnson. These guys are young. They don't know anything about ADA, they don't know anything about independent living. They have parents, family members, uncles, nieces that are in this situation. Some of them have gotten onto that House Ways and Means Committee on Social Security because they have relatives that are facing these SSDI barriers. That's exciting. This concept of needing personal assistance and feeling too needy, feeling like a burden. Those folks really need this information. They are managers. They have management skills and if they don't have them they need them and they need to get credit for it. I mean, I'm, I have to be manipulative with my staff to get what I need from them. But to get out of bed or go poo? Hmm, intense. Intense, intense. Double jeopardy hurts more than one oppression. Negative stereotypes. We've talked about this already, about how it meets this intersectionality. I like that word, that is a new word for me. And the healing path is similar in this development of pride for all these target groups and how we interface. And we need to hear people's stories. That's how we get empathy. That is how we know to how to support each other. We need spaces where we can hear stories. I'm going to skip through a little bit of this. Ways that ABIL uses this theory because that's what you wanted to know. Front line staff if they get this information, they are much better prepared especially because they come from all different backgrounds, to know how to support others because they come in with their personal perspectives just like the consumers do. And it has got to be broadened. We can't assume it is going to happen naturally. But I think often we do and don't invest in some of the training that they need. And one of the ways we do leadership development is with our peer mentor team. We have a, some of you have been to that training, we have a big peer mentor volunteer team of about 35 people and over time together, they, we empower them. We make it available for them to tell us what do they want to learn, what do they want to share with each other, and they all get this information. They all get this information as part of their orientation and they get it throughout their experience of being a peer mentor. So they have a volunteer coordinator that supports them when stuff is going on with their consumer that they are matched with to look at it through this perspective to help them understand what discharge is through this perspective. To help them identify what are the patterns that need to be contradicted that are not true, where they have internalized oppression. So they have turned out to be really our grassroots advocates. They are just an amazing group and supported each other of course. And they have all different kinds of disabilities. We integrated into our disability awareness presentation so in and out of the etiquette and people first piece, we throw in pieces of this to give people a perspective of stereotypes. And another thing, I will have people do, peers talk about names they don't like to be called by their family and friends. To just think about that concept about how people talk about you with a think and listen. So I've talked about they may not have social work and counseling training and so we encourage staff to attend a disability liberation workshop. I do two or three a year usually. Gives understanding about the importance of listening which they may not have those skills. Allowing stories to be told and the expression of feelings. It helps them identify their own prejudices and I always talk about that same thing. Which feelings are you more comfortable with? Where we raised hands. We do that with the peer mentors and the staff too, to get them to have more insight into themselves. That's the thing if somebody has gone through a counseling program, they have had things that made them do that kind of introspection. Some people do it through their spiritual work. But not everybody gets that. Helps them be supportive and most identify. What happens when their consumer gets stuck someplace. I have referred her. She says she wants to get a job. She is see a year into her disability. She wants to get a job. We refer her over to the employment network, but she never follows through. What's going on? Well, it turns out she has issues with her child and can she be a good parent with her disability. She has issues she has not got to explore yet. She just is not quite ready mentally to move to being a proud, competent worker she has skills from before and can do a lot of the same work but she's not sure yet about herself and she needs the space to explore that before she's ready. Staff become better advocates. I never understand people who are in independent living that are not advocates but we have people who are not. They are more support counseling-type people and they are more into the interpersonal, they get stuck in that interpersonal place and they don't, as staff, they don't leap over to the system political perspective and advocacy. So these are some tips that are in your packet for front line staff about allowing people to tell stories and to stay relaxed and delighted with them and contradict places you can see where they've internalized stuff. Explore their own memories. So this is the same as ally work, right. Encouraging our allies. Was that 10, okay. Thank you. Reminding them that if someone is having feelings to maybe not interrupt them. Let them have it for a little while. Might be okay to have feelings for 5 or 10 minutes. Might not be the end of the world. They might be done feeling better and they might feel sunk and need an up and out from you. Some other topic to end the conversation with that is totally disrelated so they can move away from that. And I always encourage people to not bring up that topic until you have the time designated that you are ready to do that. In the hallway don't bring it up to them. How are you doing your most hurtful spot? That's not a good time to bring it up, right. So when we do so stuff in groups, confidentiality with each other but also outside of the group and also with each other in between the group session. And how to keep an eye out for them when they are identifying with a negative stereotype. Teaching them about the ableism. Inviting them to workshops. This is the first time I've put these thoughts down in this way about what do I do so some of it is repetitive. Providing safe places to explore the concepts. So some of my staff that have been to this training know that I have some staff on my team that haven't and want us to do that it in the team because they think it will make a difference for them. The idea of a place to have structured turns, conversation where you are taking turns, which both trainings have emphasized is really important. And timing is great, that way it is fair. And I can, I'm a talker, but I can be quiet if I know there's a limit and I'll get a turn. You can decide whether to include allies in the workshop or not. I often do because it's very eye opening for the allies as well for those family members or caretakers or assistants. And reminding them who we really are. Causes and results of oppression. This is just repeat stuff. I gave you the sample outline of how to do the workshop. Kind of the progression that you would use which is similar to what I did yesterday. I talked about the concept of trading time and how valuable that is. Any time you are doing a long training it's really good to stop and do that because people get a chance to integrate the information. This baby, did you like the babies exercise? It's fun, isn't it? Trading time. When I was doing co-counseling we traded an hour at a time. Listened for an hour and supported each other. That seems like a long time doesn't it? Time flies when you are having fun. I hate those doctors. Yeah, I did a lot of that. What brings the discharge? This is important, is safety, all right. So that's why when things are going well, you cry sometimes. You know, you dump off tension. Think of it as tension that builds up in you. In your brain and your body. And so, what really, discharging is a natural process. You get hurt you discharge. Or it is safe and some old stuff dumps off, and you know what, you don't even have to know what it is, you have to trust it's a good thing and it's moving through. And as long as it moves through what is natural feelings to change then you are in good shape. So I have the tips about, you know, how to trade one at a time. The different kinds of stories that you can tell. Early memories you can do a lot and people get different memories over time. Anyone have a different memory come up last night. No. We are out of there. Thank God. I saw somebody nod. People are not good at listening for long so that's why you are taking turns. You can ask to hold hands. It was revolutionary for me to have somebody invite to hold my hand while I told them how mad I was about something. How often do you get to be really mad and have somebody holding your hand and it was with them? [Laughter] I know. Can you imagine? It's really a different thing. Plus you have to develop trust for that thing. What did you say? Otherwise you have your wrist broke. It's scary. I did a lot of the shake thing that I do. Oh my God, five minutes. Affirmations and contradictions. So that is where you have some handouts to help you with this idea. But a contradiction is not just an affirmation like I'm lovable, it's something that is more believable for somebody who is going from the basement to the attic in their self-concept. So it's like I may not be totally unlovable or some part of me somewhere is totally lovable, and you know it works because they start laughing or trembling or, you know, making, they start wiggling around and stuff. You know you're on the button with that. And there is lots of different contradictions developed for different constituencies through rc. So here's one for people with disabilities. I cheerfully promise that from now on I will always remember that my body/ mind is wonderful and that I am fully human, that I am totally admirable and lovely to be close to and I will confidently expect to be cherished exactly as I am by all human beings. That is a mouthful right. You could even just take one part of that out, it would probably be enough to start with. It's a nice direction, any part of that. And so when I do the workshop, I get people to come up and hold my hand and do these. This is the one that got me into leadership. I'm obviously completely incompetent and totally inadequate to handle the challenges which reality placed before me. However, fortunately or unfortunately, I am the best person for the job. Ooh. I'm the best one to do this workshop for you. Woo. Ha-ha-ha. I guess so 'cause I'm probably the only one right now, right? So this really moved me forward in taking on leadership and deciding consciously to take it on, whether it felt good or not, and then I had allies that cheered me on when I was crying behind the doorway in my house on the floor before my first workshop that I led. I had set up a co-counseling session beforehand, she came in. Are you here? Where are you? Behind the door on the floor. I can't do this. And especially this fear of attack. We get fears of attack taking on leadership. Anybody ever speak in front of a class in school? Oh, that was usually a positive experience, wasn't it? Ah, yeah, so there, see, that's a great topic to bring up for people when they're thinking about leadership. What was it like in front of the class? So this is also about how to listen in that way that somebody is a treasure box, which I think they are, if it's a person who is blind and they can't see your expression, you could work out some kind of signal, like, and holding hands is a great thing to do with permission, you know, squeezing, can I squeeze your hand? That would be when I'm beaming at you. So you know I'm beaming at you, that kind of thing, so they can know that I'm right, I'm here with you. I'm listening. So in front of the group is a great thing, and I, we probably don't have time but I would love to do it with somebody because it's so great. I don't sweat and I always get lots of juice from people in their hands when they do it because pretty much everyone sweats in front of a crowd. So you ask them to do it, you give them permission, you hold their hand in front of the group and you have them talk about their life in front of the group, or, and you have group rules, like Stacey's rules that we're going to be respectful of each other, and if the group laughs at some point then I remind them they're discharging too while you're discharging. Oh, look, your hand is sweating. Ooh, exciting, right? And the way people look is so amazing how their face changes, color comes into their face, they stand a little taller or sit a little taller. By getting this opportunity, that's a way to develop leadership. Get them up in front of the group in this supportive kind of way where there's an agreement about how we're going to treat our leaders. Do you use this when you do the peer mentor when they, cause they train each other, right? Yeah. So reluctant leaders are the best leaders but don't leave them stranded. Be there to support them so they can discharge off this stuff that's in the way. And thank them when they're done and ask everybody to give them a big hand, you know? So that they get a sense of, and it's ended, give them an up and out if it's something kind of heavy and up is out is, you know, what's your favorite movie, something that's unrelated, who's your favorite musician, things like that. A note about confidentiality. So you want to remind people that what is said, so that's the same thing that I already just said. Not only do you not talk about it outside of the group if you're doing a group experience but that you don't bring it up to the, whatever the stuff is in the group, you don't bring it up outside of the group either. Unless they've given you permission to do that, help me remember this. And this is when a referral is needed, and that's when somebody is stuck in one feeling. That's a rehearsal of a pattern. That is not healing. And that is time to get some other help. So I already told you how I set a strategic goal to have a relationship based on this theory. It's where I was holding back because I felt fear and totally incompetent and that was no reason to not do it, right? But I would anticipate that there would be some feelings along the way. Yuck. Yuck, yuck, yuck. So that's how you can really help people make some strategic goals, and little gentle nudging about taking on leadership and recognizing what they've done, that's leadership. You know, for me to remind Valerie that the fact that she's never has skin break down and that she's had to hire over her lifetime probably in the hundreds of attendants, because they don't all last with chemical sensitivity or any other reason, you know, those kinds of things, reminding people of their strengths. And setting up allies, setting up a cheering section. So important. So this is just kind of summing it up, that people can see their personal experience in a different light and they can see where they've held back, where their shame is, their embarrassment, their feelings of incompetency, where that is coming back and how that's holding them back. And we talk a lot about, I remember when I first came to ABIL, we talked about yeah if a disabled person bounces a check, they take the checkbook away but if somebody else bounces a check, they just have to pay $35 and pay for the check. This kind of enabling thing, this fear of letting people with disabilities take risks, and we're kind of good about that on one level, but this is like taking risks kind of on an emotional level to challenge these places where we feel incompetent or shy or anything. Oh, that's just, don't take that seriously. Now, maybe the situation is dangerous, like with Valerie and the situation with the attendant. If you really tell her, I don't think I can give you a reference because you're scary for people who are vulnerable, that was a real risk, that if she told that person, I could not have an opinion on that because it was a real risk that this person would blow up and leave. She had to make that decision herself, and she did. And she's living with those consequences now and she has anxiety but she does not feel bad about what she did because it just proved that she was right, right? It proved that she was right. And that gives her another brick in her foundation of trusting herself, because so much of this stuff with the internalized oppression leads us to not trust ourselves, not trust our own feeling, our own experience. And how can you be a leader if you don't trust yourself? You have to have confidence to take on leadership. You have to be able to trust yourself. So, you know, the person becomes more political. You can more likely to get involved and think you're a valuable member of the consumer. How many of you feel like, gosh, people with disabilities just don't show up and they don't even bother to tell you they're not coming? Yeah. Where does that come from? They don't think it matters if they're there. They don't think they're missed. So ways you can use it is with your mentoring relationships, participating in public policy advocacy, joining boards and councils which we're going to hear more about this afternoon, and pursuing careers and other areas of interest. So we often have mentors go back to school, they go to work, they do other things because of the confidence that they have that grow and the experience they have had being mentors. And the values that it has given them. And we watch out during that training, again for those people that are the urgent leaders, the urgent mentors, I've got something to teach somebody right now and I really need them, we hold them back. Oh, they get frustrated. So that's one reason we had that group for some of those people to go into because we weren't going to let them loose one on one with somebody yet. Some staff are like that, too, I'm sorry to say. They're in there because they need to feel good about themselves by helping other people. You have to watch out for that. Ta-da. Any questions? One of the logical progressions was us starting to do this thing where we are starting to weave together the intersectionality and bring people together to look at how our issues are the same and that was kind of hot off the press for us. I was really excited about it and want to do more of.