AMINA DONNA KRUCK: I am Amina Donna Kruck. We just had this mind-bending presentation that my mind is stretching to absorb right now. I don't know about you. You may just have to shake it off a little or, you know, really stretching us to see these deep issues that we don't have conversations like this about much and it's a lot of risk taking is happening. Just to notice that it's hard to get. It's hard to let it in and think about how to use it. That concept of a different way to do a movement, to start with one simple easy issue and instead take the people who have the most that are most marginalized and if you've got them, help support their leadership, so if they are taking charge and leading on their needs being met, then we will have a more just society. That's, like, fabulous. And for me, I'm coming from a different place. So this is what was so magical and this is what Darrell and Paula were referencing for us to put this together. Because they took people who were doing different things from different centers and put us together. And there are some linkages that, but I want to invite you to not force it to happen for yourself. You know, that idea of the, what do they say when you are meditating with your eyes open. What do they call that? Puug. No. What I mean is like looking without focusing your eyes. That's what I mean. Like when you stare at the sky. So let it ramble around. Let yourself be uncomfortable by things we are talking about if you have some discomfort. Don't try to figure it all out right now. You ever go to a movie and you think "what is going on in this movie" because it's so complicated and you really can't follow all the story lines and you have to sit there and when it's over you walk away with a certain feeling. Maybe even uplifted and you are not sure why. Or heavy and you are not sure why and you have to think about it for a while. And that's what this training, I think, for me, that's what this training is like. I knew it as we were planning it. So we are taking a risk to share with you our heart's desire about what turns us on in this movement. That's what Dolores and Stacey just did. It's they are cutting edge and they are sharing it with us. This is one of mine. This is part of mine that I'm sharing with you, a personal story about where I, did I turn it off? I'm coming from, I had, I had a background through re-evaluation counseling or co-counseling. I did that for 20 years. Anyone here familiar with that concept? So somebody here. So I took some seeds from that that I learned because they were doing healing work with each other on a peer level of sharing stories. And part of that was, letting the feelings discharge off. Whatever the feelings were. And out of that they realized, well, I can heal some personal hurts but I'm going out into a culture that has some societal hurts, the isms that we have been talking about and that required something a little different to cope with. It really struck a bell for me. I grew up in the San Francisco Bay Area. I live in Phoenix now. Next to Phoenix. And I grew up with a skin disease. Psoriasis. So I really look different, but was it a disability? No, but I look different and I got taken to Stanford Dermatology Clinic week after week to get cured by a teaching hospital where I was continually observed, biopsied and experimented by a bunch of young residents during my ages of 10 to 21. During my developmental years so that really influenced me. I grew up, went through school. Got worse as years went on. Did anybody notice it was not working? Because they didn't understand autoimmune disease. In my 20s I got arthritis and my baby who was six months old could crawl faster than I could walk. Now I have chemical sensitivity. Anybody with that, be careful with that soap in the bathroom. The first time around, it's okay. The second time, it will kill you. Be careful. The training that April and I have done my colleague from ABIL. We started to realize when we were doing trainings together, we were so invested in this concept that I'm going to share with you today because it was during our developmental years that we were guinea pigs for medicine and I see some nodding heads. Thank you very much. Through co-counseling I heard hundreds of stories. Hours of stories. They always think we always talk about our disabilities all the time but we don't really. About what it is like. And I hear stories of people who went to children's hospitals to be improved upon through surgery and whatever, to walk and use a chair they would not be in pain all the time. Or someone who had curvature of the spine. He was sent off to a military hospital every summer for therapy which was basically some weird medieval stretching machine and kids, young people witnessed for each other cause they had to have somebody in the room with the doctor so they witnessed the torture and then they got to have the torture. So I got to hear lots of these stories. And it really influenced me to put into perspective my experience. And all that was before I came to the independent living movement. I came to ABIL in 1990 right after the ADA passed. So I was not part of that movement. I have been part of other civil rights movements, but I had not been part of that movement. But I have been learning through [not understood] I am going to go about this from a whole different place, so, shake it off. This is who we really are. Good, lovable, valuable, creative, intelligent, cooperative, attractive, strong, powerful. And as we know in our movement disability is a natural part of life. I like to say, either you are going to have a significant disability in your life or you are going to drop dead before you get it. So it is, and we all know that a label of a disability doesn't tell you what it means much about functioning, ability or need for assistance and we know there's this whole spectrum and that's what life really is and Stacey mentioned that. This is what I, sorry, what I learned about oppression and what it has got to do with me. Is it changed my perspective from a personal one to a political one. To seeing me not just as a medical problem, but to see this attitude in the culture about disability that it needed to be exterminated or cured. And that some of the feelings that I had, I'm going to talk a lot about internalized oppression. Some of the feelings, and why it's important to look at that to move to activism because the truth is we are in a political system where a vast majority of people work to produce wealth for a small minority. My latest, I got to write a letter to the editor is this whole Donald Trump thing about the immigration is a diversion from the economic inequality in the country with corporations and the people who are making millions of dollars and the people who are not. And the breaking of unions. If you get people focused on immigration and who else better to do it than a multimillionaire. So that's how it works. It's an economic, political system that marginalizes anybody that they consider outside the norm. Why do they do it? They want to do it to divert your attention from the real problems going on that they are causing. It causes a disability and a stereotypist as less or nonproductive and devalues us, invalidates us. Invalid, you know the words and further disables us. Some of this is going to be old hat for you because you are in the independent living movement. So it is a psychological trip of separating us from each other. I love, I had not looked not nonprofit connection that they just shared with us which I love. Because It does, it separates us, puts us in competition with each other for scraps so that we don't really join together to change the systemic problems that are wrong. And then it's a pecking order and we know there's a pecking order within the disability community. You know, who is the most disabled. Who is most important, least important, whether you can see a disability or not see a disability. The reality is there is no normal. Okay, there is no normal. You guys probably already know that. It's not big news for you. It is big news for a lot of people. It was big news to my parents. They were striving for normalcy their entire life. Literally my uncle was Winston Jones. We were always trying to keep up with the Joneses in my family. Causes of oppression. Kind of outcomes too, it's a loop. It is a loop that keeps happening. Negative stereotyping. Discrimination. Segregation. Institutionalization. Inadequate incomes. Economic exploitation. Environmental barriers. Not just to mobility, to all kinds of environmental barriers, like the soap in the bathroom here for instance. Control of our lives by others. So this, these stereotypes do get internalized and I'm going to talk more about that later today and tomorrow even more about that because it's so pervasive. It's internalized then by us and that's a big problem from the get go about who we think we are. This is just one perspective. Why I'm sharing it with you, is because it can move people at your centers, your other staff, and the consumers you work with to think about this. Because they come to us mostly from a medical model, right? And so they are thinking about the disability is a problem. They are feeling less than, they are feeling like a problem. All of this is internalized oppression these experiences they are having. They feel isolated. So our job is to help them get a new perspective so this is one way to do it that I'm sharing with you that you can take bits and pieces, however you want to, to use in your center and I'll be happy to support you. Part of this is, this information doesn't get set in on only an intellectual level. It gets set in also on an emotional level. And Stacey and Dolores also talked about that a little bit. I'm going to talk about that piece a little more. It's true, I have a counseling background. I have a master's in counseling, but the counsel, this is a different theory that I learned in our c that's helpful. Whether it's true or not, it's a helpful picture about what happens with people and experientially I know it to be true. So words and attitudes hurt, right? We all know that, right? Someone can just look at us and hurt. My husband will say, "Stop yelling at me." I've been really careful not to yell at him but he knows I'm pissed as hell, but it isn't the same thing. So these things, the look on someone's face when I walk up to them with my skin difference, right away I know. Also how we're treated can really hurt us. So they go together and the hurts that we have bring up feelings, anger, sadness, disappointment. You can be hurt and have feelings and not show it. So is there anybody here who's ever had a big feeling and not shown it where they were? Did you get away with it? He says no, she says yes. Absolutely. Sometimes we get away with it, sometimes you don't. Just noticing you're a man, she's a woman. I don't know if that has anything to do with it. I don't know. I'm just noticing. So, and the big thing I want people to know and part of how we use this in our center is training our peer mentor volunteers is showing hurt is not mean you're more hurt. So that's the big clue. We know we've all been hurt and not shown it, so when somebody is showing hurt, my view is they're letting go of the hurt and they're showing it 'cause it's safe. We'll talk a little bit about people who have mental health issues where they get stuck in a feeling for a long time and that's something different, but having feelings coming and going a lot, that's pretty normal if you're awake to reality. Things bring up anger, they bring up sadness all the time, and the discharging of it off is natural. And so I always talk about this when I go into this topic because you might be having some feelings about things you hear here. And so there is a list of the things that are hurts, physical injury, a stubbed toe, getting assaulted, emotional hurt, is oppression, being called names, disappointment, grief, told lies. Anybody had feelings about being told a lie? Or being betrayed? Yeah. Feeling trapped, which oftentimes people with disabilities can feel like that by service providers, boy, I was sitting there making notes about case managers and now we have this opportunity with the new CMS rules to interact more with the health plans because they need to do more community integration and employment support. Those case managers have power that can really make us feel trapped. AMINA DONNA KRUCK: and they lack knowledge and they change jobs all the time, so we have to keep reeducating whoever we get, right? And what's a chronic pattern? A chronic pattern is something that happens that's ongoing. So feeling stupid, feeling incompetent, feeling unlovable, feeling powerless, these are chronic hurts that have been laid in over time and they sound like I'm bad, I'm worthless, prejudices that we get, nobody thinks that they're prejudiced, I don't like to think that I'm prejudiced, I'm embarrassed that I am. I have uncomfortable feelings about it but I know I am because I have limited knowledge. And so I have to be willing to be uncomfortable if I'm going to try to loosen that up a little and gain any knowledge. I'm going to need to do that. So prejudices are chronic patterns, addictions, phobias, not knowing how good we really are, all of these are chronic patterns. And so this is one piece, one picture about the natural healing process is we get a hurt and we discharge it off. So anybody here been around like one, two-year olds? Where is Tim? I know he's, Okay. Nine-month olds? So when they get hurt, what do they do? Scream, cry. What part of their body do they use when they're hurt? Is it only their voice, their face? Their whole body. I mean, talk about natural assertiveness. A nine-month old has natural assertiveness. They do not need to be taught that skill. Okay. So they discharge and then they get over it, right? And the sun comes out and they're happy. And if you watch and observe learning in those early age groups, you'll notice while they're learning how to walk or learning how to stand up or learning how to ride a bike or crawl or learn how to spell and read, they cry and throw tantrums a lot in that process because it's painful. It's painful. And yet does it stop them from learning? Not really. The thing that will stop them from learning is if you don't let them freak out. I mean, you know, some families, you risk your life if you freak out, if you show feelings. And that stuns a person's intelligence because this is the natural healing process because all children do it. But it gets stopped over time. So what happens is then we can have fresh thinking and we can move on to the next thing. And we can learn from it. But what happens, if we don't get to discharge off hurts is these pieces of information get stored in a clump in a way, if you think of it kind of like, this is of, a framework that works for me. You know, like you have all these filing cabinets in your brain and I'm walking down the street and there's a dog and the dog's spotted and it's a cloudy day and I'm wearing a blue dress and there's roses next to me and this dog comes up and bites me. What would, what would be a natural thing for a child or a young woman or a young boy to do if something like that happened? What would probably happen? What would they want to do? They just got bit by this dog. What would they do? Go to their mother. They would go to their mother, they would look for support and what would they do when they get to their mom? They would cry. And what else would they do? They would show her and, what did you stay, disclose? They would tell their story. They would tell you what happened. What happens when someone almost has a car wreck on their way in to work? Don't they come in and tell everybody the story over and over? Or the traffic we heard about this morning? That's the natural healing process, telling the story, trembling, sweating, shaking, crying, all of that's a natural discharge healing process that happens for people, and after a while they tell the story a few times and then they wind down and they're feeling okay. What else happens during that hurt experience, right? They have adrenaline, their heart races faster, that means their digestion stops, so there could be some other problems with fluids or other items in the body. Because, this is a natural process, right? We kind of learned about it, like the flight or fight. That happens when we're hurt, too. It changes our whole system. And then if we discharge, that's the natural healing piece. So I'm saying this because you may have feelings about this. So what happens is if we're able to discharge off hurts, then this information gets stored, and then next time I'm walking down the street and there's a dog and I'm thinking really quickly is it spotted, is it a rainy day, do I have a blue dress on, are there roses next to me? Well, this is sometimes where phobias come from that you can never figure out where they come from, because now maybe I have allergies to roses because I didn't get to discharge that experience. I'm not thinking as well in a new situation because I haven't had a chance to really let go of the old situation. So stuff piles up over the years and we get dumber and dumber, basically if we don't get this chance. So to clean out this stuff about oppression which I will sometimes have people write down how many times have you heard something negative about disability or yourself when you were a child and how many times have you said it to yourself and we're getting up into the thousands now. And what did you see on TV? I list all that out. It starts to give them an idea of how much is piled up, these negative perceptions about them. And so, also other forms of discharge are laughing. Have you ever, like, somebody's really mad at you and they're telling you off and you start laughing, giggling and you think now I'm really going to get killed, right? Or, like I remember we would always have someone from Planned Parenthood come out to the residential treatment center I worked with teenagers to do sex ed, and the staff would be like rigid. I'll just say that in the background. And the kids are cracking up laughing, right? They're discharging off embarrassment and fear and stuff and the staff are like, "show respect to the teacher." They didn't realize what was happening. That was a healing process right in front of them because they got a chance to hear about and talk about something they had curiosity about and needed to do. It's a natural process, so all of this is to say yawning is another discharge. I'm a big yawner and a shaker, sweating. So part of the natural healing process is to get to have feelings about the hurts, get to notice them, have feelings about them with support, just like go to mom, you'll be my mom today for just a little bit, and then taking action outside of the negative stereotypes that they tell you. So if they are telling you that your stupid, then you push on that and do something that challenges your intelligence. So right off the bat, a contradiction to a lot of the stereotypes about disability is to take on any kind of leadership and get cheered on. That's always a path for liberation for people with support and doing it with each other, that's what I mean, with support. So let's just throw out what are some of the negative stereo types about disability? When I'm doing a workshop, I will have a chart, one of those boards that you write on and we'll write them all out and put them all up on the walls for just a little while. Don't want to bum people out too much. What are some of the stereotypes and you can shout them out and I'll repeat them for the microphone. Negative stereo types about people with disabilities. You'll never amount to anything. Yes. Low expectations. AUDIENCE MEMBER: Incompetent. AMINA DONNA KRUCK: incompetent. You can't work. Oh, the definition of disability by Social Security was written in 1956, I just heard at NCIL conference. Oh, my God, that's a systemic change that needs to happen, totally. It's so out of whack. Somebody else said something. AUDIENCE MEMBER: They're needy. AMINA DONNA KRUCK: they're needy. What else? They're expensive. AMINA DONNA KRUCK: expensive. There's another word that starts with b that goes along with that. Burden. Right. What else? They need to be fixed. I needed to be fixed. My parents kept taking me back to the best place in the world, Stanford Dermatology Research Clinic. It was the research clinic in the world. Lucky me. Less privileged. That's a stereotype? Say more what you mean about that. AMINA DONNA KRUCK: could you grab the mic? AUDIENCE MEMBER: at first I was sort of thinking underprivileged or like the underclass, and that's more the, sort of the direction, I'm not, I'm not saying that people with disabilities are walking around with a bunch of privilege. Some of us are. AMINA DONNA KRUCK: but do you mean poor? AUDIENCE MEMBER: Yeah, like poor or more like underbelly. AMINA DONNA KRUCK: the underbelly. That's a new word for me. Thank you. Other words? Angry. Bitter. Cheerful. Lives are terrible. Oh, yeah, well, I've been researching stuff about, to give some stuff for diversity training for a health clinic, I found this study of people with spinal cord injuries asking what were their opinions of their life and then asking the service provider. So the questions were something like, you know, what are your expectations for your future, how do you rate your quality of life? And the persons with the spinal cord injuries, they were like 80 to 90. The service providers were like 20 to 25 percent. Way lower expectations. Yeah. Courageous. Special. Inspiring. You know I have a new idea about this. We should accept that we are inspiring and we need to flaunt it, right? Because they need to be inspired. And we are pretty awesome. So I'm a little different you know, 20 years into this than I used to be about that word inspiring. I couldn't live with what you have. Thanks a lot. What does that mean? Other words. What about sexuality? Yeah. Rather be dead than disabled. Yes. Better off dead than disabled. If I can't hug my granddaughters I'd rather be dead. Well, let them hug you. AUDIENCE MEMBER: I had someone tell me at least now you can sit at home and collect your Social Security check. AMINA DONNA KRUCK: yeah, they're jealous because you don't have to work. So at least you can collect your Social Security check. As if you can live on your Social Security check, right? Clearly, they've never done it. We have these arguments in the Arizona legislature all the time about all the money that people are getting from the federal government. Other words. We're frauds, fakers, malingerers, especially people without visible disabilities that they're faking, malingering, and the really painful thing is that we get that from our family members as much as from anybody else. So I see some nods, some people have experienced that. Yes. Sometimes when you're friends with different disabilities, their friends will compare the disabilities. AMINA DONNA KRUCK: oh, we've got to get you the mic. Cause you have more than one word to say. AUDIENCE MEMBER: I can give a personal experience. I actually have a friend with, he has crones disease and it's an invisible disability, and my friends, when I first got hurt and when I first started working again, they would tell him, "You need to find a job. You need to do this. You need to be more like Matt." AMINA DONNA KRUCK: yeah, look at Matt. He's in a wheelchair and he's working. What's wrong with you? AUDIENCE MEMBER: And I would tell my friends constantly you cannot do that. There are things with his disability that affect him in ways I couldn't imagine. So when you have friends with multiple disabilities, people from the outside look and say, "well, if he's doing it, why can't you?" AMINA DONNA KRUCK: and it's kind of human nature. They can relate to what they can see a little bit more, and then they go into this, I don't know if I could live if I had what you had." Yeah? AUDIENCE MEMBER: kind of the same I've had with friends of mine comparing disabilities. They will say, well, you have it easier, you don't have all the learning disabilities that I have. Okay. But I still have some. AMINA DONNA KRUCK: they talk about it in 12 step programs, internally unique. All the time I have people telling me these stories. I have one friend that has chemical sensitivity and chronic fatigue syndrome and she is going on and on. And another friend, the one that I told you about before that has a high spinal cord injury and chemical sensitivity and electromagnetic sensitivity. Yeah, it is like trying to compare. So we do that with each other. And we have the same ignorance’s about different disabilities than our own as people who are nondisabled. Because you cannot know until you know. And I love also, as Stacey said, movement building is relationship building. And so getting to know more people, that's what's so fabulous. Here this is our improbable theater. That's a collective systems change project that's run by the people themselves they are a theater group without a theater group because they keep changing and somehow they keep doing their thing. It's amazing. So they are putting labels on Kathy here, she was dreaming about this group for a lot of years and created it. The results of disability oppression are striving for this mythical ideal of normal. This is all laid on differently based on individuals too. So this is not a broad stroke because somebody who has lived with a disability their whole life, this hits differently than somebody who acquires a disability later on in life. Right, because their disability somehow took something away from them that they have got to get past if they acquired it later on as opposed to someone who has lived with it and it is part of who they are their whole life. So it's not the same for everybody. This concept of ableism or being normal, discrimination and prejudice towards people with disabilities. I wanted to be normal. I was striving for normal. Okay. Why? Well, think about it. Here I was 11, 12, 13, growing boobs. 14, 15 started my period. 16, 17 wanting to know if I would have ever a boyfriend. 18, 19, examined by a row of doctors on a regular basis and a look on their face. Did you do what we told you? Yes. Are you sure? What did that tell me? What was the message? What did you just say here? They didn't believe me. I'm not trying hard enough. Maybe I really didn't want to get better. That was big in the 60s and 70s. Blaming mothers that was another thing. Psychologically. Maybe it was psychosomatic. AUDIENCE MEMBER: it was a big thing in my family when I was a kid because I lived in a two story house and I could not manage the stairs. My mother would say if there was a quarter at the top of the stairs. When I got a little older, if there was a candy bar at the top of those stairs. Got a little older, if there was a cute boy at the top of those stairs. AMINA DONNA KRUCK: right, as if you were not trying hard enough. AUDIENCE MEMBER: And I said to her one day, mom, if there was a cute boy at the top of the stairs, I would ask him to come down them. AMINA DONNA KRUCK: I love that. As I learned this theory I got a lot more forgiveness from my parents and how they were rushing for the cure for me too. Because they were doing what society told them to do as a parent, right. They took me to the best in the whole world. Lucky me. And somehow nobody got the idea that I was getting worse and worse because back then they didn't understand autoimmune disease. And so something worked for a while and stopped working, then they gave you more of it. So I always say now I have nuclear bomb psoriasis because I was given cancer drugs and coal tar and ultraviolet light treatments. Probably I have had 50 skin cancer surgeries over the years from the ultraviolet light and coal tar. They were doing the best they could. This is something visit family therapy never could help me get over. I studied psychology. I kind of wanted to know if people who looked normal were, because I was on the search for normal. I only had to work in that field for five years and then I realized that was not the case. Or was the case, you know, because then I got to learn more about the breadth of what normal was in the mental health world. Anyway, back to this piece here of oppression how it affects us. Devaluation of differences. Environmental barriers to mobility and of course reading materials and all kinds of things. Not just mobility. To sign language interpreters. And segregation. Institutionalization. Kind of the very things that cause it also are the things that are the result of it. I was talking to some folks at my table like this year. I don't know if you guys are awake to it yet. But the CMS rules coming down. You know, what ADAPT has been fighting for all along. Much more, about community integration and home and community based services. It's coming down and oh boy are some of those providers freaking out about it. And WIOA also The Workforce Improvement and Opportunity Act. Thank you for the nod at the back. Also integration. Employment, youth, starting younger. All these things that we have been fighting for are actually coming down in mandates from the federal government. Now we know it will get screwed up. But it's leaning in the right direction in the way that we have been fighting for years and demonstrating for years. I know some of those people working in those government agencies that have infiltrated for years. God bless them. It takes every kind of advocate. Every kind of advocate. One of the best advocates we had in Arizona, I called her a stealth bomber advocate. Very soft spoken. Kind of bumbly, like Columbo, that detective kind of thing. But she worked on the election campaigns for the republican legislative leaders in Arizona. When we were trying to get the Medicaid buy in through, so first we had to bring someone from every district to a legislator who was a person with a disability that wanted to work that could show them that they did not need segregated employment. They were not going to chase the employer around with a knife or other stories that some of the center based employment folks had been talking to the legislatures about, to get there mind. So we had some picture poster people who were working for the mayor's office and different things to change stereotypes about disability. But meanwhile, Pam was working on the election, in the old days they were envelopes. They were doing mailings. They were there for fundraisers. Carrying the water and the cookies and she had access to the speaker of the house because she worked on his campaign. And he said, Pam, what do you think about this bill? Tell me about this some more. Not loud spoken. Not like me. Not out in front of people. I get high off of yelling at picket lines, you know, my crown shocker start vibrating. Pam was not like that but she was effective. Everybody is a good advocate no matter what personality type they have. These results of oppression and causes, interesting. Perpetuate each other. The wonderful thing about a law like the ADA is that we actually get to hang out with each other more in public. We have gotten more used to each other. We are not quite as afraid of each other as we used to. Now what we really face is a lot of impacted curiosity. People really want to know more about disability and that's why I say, you know, really we are inspiring and we are ambassadors and we should take that on as a badge of pride and use it because people are curious about disability and they do want to know more information about it. And they have friends that they are afraid to ask about it. For the friend who has it. It is a little bit different perspective. What I want to you to do quickly. This is an exercise I love to do, which is earliest memory. Get partners. I call it a think and listen. There will be an a and b person and I'll tell you who goes first. Find a partner and when you've picked an a person and b person raise your hand so I know you have a partner. You might have to move, if there is not somebody next to you but it can be with anybody that you know. So you guys are set up. We need somebody over here. This lady needs a partner. Why don't you bring your chair over for her? Thank you, Chad. Is that okay, you are going to partner with Chad. And they are going to partner. I know you know each other and its okay because you probably don't know this about each other. And if you do, I want to know, I'll be impressed. This lady needs a partner. Who doesn't have a partner? Mike, right? Bob. Bob and Mike, I get mixed up. I'm so sorry. I'll get it by the end of the training. Everybody has a partner and you picked a and b person? Okay. All right. Great. And so one is going to be a speaker first and one will be a listener and then you are going to switch. Each person is going to get a turn. You went through this before. I call these think and listens. I stole many things from co-counseling. Re-evaluation counseling. What you are going to do, the topic is your earliest memory, in any way at all, of a physical difference or a mental emotional difference. Your earliest memory, try to go as early as you can. Whoever is the talker will tell that memory in as much detail as they can and if there's more time, then tell it again, unless they get an earlier memory. The listener is going to listen to the person talking like they are a treasure box opening in front of their eyes. I know some of us are talkers and some are listeners and but it's only going to be for a minute and a half. So you can do it, I do need a watch. Anybody have a watch that you could just hand me. Thank you. Between glasses and a watch I can do this okay. So you know the instructions, right? What's the listener is going to do? How are they going to listen? Like a treasure box opening up. So b is going to be the talker first and a is the listener. The question is what's your earliest memory in any way at all related to a physical or mental behavioral health difference. And if you had a disability, it could be when you first noticed that you were different in some way. Okay? Could be anywhere. Media, family member. At school, at church. In the neighborhood, whatever. Was that surprising a little bit, the story you came up with? I've done this 100 times literally. I'm not making that up. I rediscovered I had a grandmother. I kind of thought I wasn't raised with a grandmother but it turned out I was. But she got whisked away to a nursing home after she had a stroke and I never got to see her again and we never talked to her again because that was my family of origin's way of handling grief. Anybody want to share a little bit about your earliest memory? Use the microphone, please. Great. AUDIENCE MEMBER: Hi, name is Ron. AMINA DONNA KRUCK: hi, Ron. AUDIENCE MEMBER: I feel like I'm in AA. I'm kidding. I was four years old and I remember I had to have my eyes operated on, and they had covered up my eyes before the operation, went into the operation and I woke up, I was in the hospital bed and I was in another room with another student and he was watching TV, and as a four-year-old, you want to pull off whatever is on your face. Well, it got to be a struggle and they ended up strapping me down to the bed and restrained me and basically said I'm sorry, you can't do it. I was crying and screaming until my mom came in. And she was basically saying, "What are you doing to my kid?" And I look back at it now and it was only a TV set but it was a cartoon that I really wanted to watch and it ended up being traumatic for me. AMINA DONNA KRUCK: and you were how old? AUDIENCE MEMBER: Four. AMINA DONNA KRUCK: Four, yeah, great, I love early memories. The earlier the better. Yeah, go ahead. AUDIENCE MEMBER: Hi, this is John. I remember when I was four years old as well, we were at a family function, we were at a picnic and I was goofing around and I fell off the picnic table onto my arm, I broke it in three pieces and somehow for some reason it didn't hurt. And my reaction was, "extra elbows." And I was ecstatic until my mother saw it and panicked. And then she started crying over me and I got all embarrassed. But I, for whatever reason, because it didn't hurt, I didn't see it as a negative until I got the cast on. AMINA DONNA KRUCK: so we're hearing stories about people themselves. You've got one, Matthew. AUDIENCE MEMBER: Yeah, mine is about my uncle. I was six, we went to the hospital, he was diagnosed with AIDS, and I just remember wondering why he couldn't come home, why he was getting so skinny, so sick, and I remember my parents explaining that he's just not going to get better. So I just, back then I couldn't understand why. AMINA DONNA KRUCK: did they let you talk about it and ask questions? AUDIENCE MEMBER: Oh, yeah. And like, you know, back then it wasn't, I was six. We weren't sure how people got it. Then they knew, so I knew I could hug him. I knew I could be around him. My parents knew, I didn't have to worry, but I just remember wondering why he couldn't come home. AMINA DONNA KRUCK: sure. AUDIENCE MEMBER: But he did leave the hospital afterwards and I remember going out on the boat with him but it wasn't long after that that he was back in the hospital. So I think that's my earliest memory of someone with a disease or disability. AMINA DONNA KRUCK: thank you. Yeah? AUDIENCE MEMBER: My memory was also as a young child, probably five or six years old. Originally being aware that, I'm going to say middle-aged cousin that would come over and visit during family, extended family get togethers with her sister. Her behavior and her sister's behavior were very different. One was extremely outgoing, the life of the party, she did a lot of traveling and would tell stories, and yet the other cousin would usually sit in the rocking chair and just basically stare off into space, and I would really have a hard time engaging in any conversation with her. And it wasn't until I was probably maybe fourth grade that I, you know, come to realize and find out through asking more questions that she had probably had a chronic significant mental health disability, schizophrenia probably, and she had gone not only through electro shock therapy but a frontal lobotomy and that had basically changed who she was. AMINA DONNA KRUCK: can I ask you a couple questions about that story? So how did your family treat her when she came over? AUDIENCE MEMBER: Treated her very kindly, like would engage her in what was going on as far as with the family activities as much as she was capable of responding to. AMINA DONNA KRUCK: and did you get information? Were you able to ask questions about what was going on? AUDIENCE MEMBER: Yeah, but it was with my mother. It was, it was her immediate family who wouldn't talk about it. AMINA DONNA KRUCK: okay. Yeah. Thank you. Great story. AUDIENCE MEMBER: and it was my first awareness of the lack of awareness about people with mental health disabilities and the oppression that was happening and the really terrible treatment that people had been going through. AMINA DONNA KRUCK: how old were you? AUDIENCE MEMBER: started when I was around five or six years old, but then I really became more aware when I was about 10. AMINA DONNA KRUCK: yeah. Go ahead. Take one or two more stories and then we'll move on. AUDIENCE MEMBER: I guess mine is a little bit different because most people are talking about them recalling memories from a really young age, and believe it or not I'm not really that old right now. But my first memory is from when I was in high school, actually. Now, I'm from a small town of a little over 2,000 people, so, but when I was in high school, all the other kids with disabilities were segregated still, and it was what they called the little red school house which was still on school property but it was away from everyone else, and the only, the first time I saw someone with a disability was in the lunch room. And so I guess part of me is kind of alarmed at that, that it was, I was probably 14 or 15 before I first noticed people with disabilities. Either that, or I guess maybe because this particular individual's disability was very, very visual that that's kind of what burned in my brain. I don't know if there were other ones AMINA DONNA KRUCK: did you get information? Did anybody talk to you about those people? AUDIENCE MEMBER: No. Oh, no. Like back then, of course, there was no disability training in the schools like what we try and do now as centers. There wasn't any of that kind of stuff, so everything was extremely segregated. They were all, all of those students that were from this little red school house were all sat at a table together away from everyone else. AMINA DONNA KRUCK: so it was segregated and also kind of hush hush, right? Yeah, nothing like hush hush to help stimulate memory loss and also curiosity. So one more story and then we'll move on. AUDIENCE MEMBER: mine is kind of similar. I remember, it's probably jumbled together from about five till about seven or eight. I lived in a small town similar to what was being said and I was the only kid who was mainstreamed. So I was either getting stared at by my own classmates and getting excluded there, but for me that was kind of normal, but the thing that probably hurt for me was when I would go around town and even just going on the outskirts of my town, and little kids wanting to come up and interact with me because I was their same age, but mom and dad, "we don't talk about that. Come over here. Stop pointing." So I became something like, I instantly knew at six or seven years old, something was wrong with me, not that I was different but that it was wrong, too. AMINA DONNA KRUCK: and in fact I had a lot of people ask me what was wrong with me, or they asked somebody else about me. Where you in a chair then when you were young, too? Yeah. So this, the more you do this, the more memories you get. Like tonight you might get another memory that comes up to you that you hadn't thought of because that has happened to me doing this so many times. This is a great way to get some idea about where we got our perspective about disability and learn something. I had a staff person once who had been through my class, and at one point she said to me, you know, I have to be honest, I'm really uncomfortable around people with mental health disabilities and I never knew why, but you know what, I had an aunt, my mom's sister, who had a mental health disability and when she was coming over to the house, my mom would put all the kids in the closet. So you, yeah. Isn't that mortifying? It's just horrifying, right? But it complains her discomfort. This was someone with a spinal cord injury, a paraplegic and activist in the disability community. So these early, early experiences about what is said and not said really feed into our perspective. I know we'll talk later about media. But this is just those really basic things about, do you get information about the person or not? Is the family relaxed about it or not? I often find when I do this with people who are in the helping professions that don't have disabilities, they often have family members that grandma was blind and we played poker together, you know, or, you know, they knew them as a person first. Back to that piece, they knew them as a person in their life. They had a relationship with them. So at the get go they are a little more comfortable around other people with disabilities because they already have a relationship with somebody with a disability and didn't see it as so outside of the normal. So some of our best allies come from family members. Anybody here read John Hockenberry's book, "Moving Violations"? Great book, hysterical book, very funny. Over time he starts talking about who was disabled in his life that he never thought about before, you know? It's really powerful. Turns out he has an uncle living down the street in an institution his whole life he didn't know he had. Because his family didn't talk about it. So these are some of the foundations of where some of these ideas, personal ideas we get come from. Then there's the economic exploitation, sheltered workshops, other results of oppression. Low pay for caregivers. A thing that is a real bug for me right now, inadequate incomes. When I have somebody, I always tell people when I'm working doing the workshop, you know, if you're feeling like you're a burden, think of all the people you're supporting economically because of your disability. The wheelchair manufacturer. Why do hearing aids cost $6,000? Who's making money off of this? Somebody is making money off of those $20,000 van. $85,000, I know it has got all these neat computers, but you know what, transistor radios cost $12.50 now. Why are things so expensive? Somebody's making money off of us. So feel proud. You're part of the economy. Inadequate income, so the poverty rate is more than twice as much as non-disabled. You guys know this but when you're using this with consumers, they don't. Thank you. Unemployment hasn't budged in over 25 years. I mean, right now they have all this stuff up for National Disability Employment Awareness month, and they're so proud, it's the 70th year. I wouldn't be proud it's the 70th year. The unemployment rate is the same or worse. That's horrifying. So this is a cartoon that's progress. It's a guillotine with a ramp. Scott Chambers from the old Mouth magazine. Control of our lives by others. Less likely to vote, less likely to run for office, more organizations for people with disabilities than run by them. Lack of political awareness, these are all results of the oppression. Stresses on our families who are also stigmatized. And this is many of you. How many people already know this: it's the paradigm difference between the rehabilitation paradigm and the independent living paradigm? Like, this is a Bible, just like the Ed Roberts 60 minutes, this is a Bible at our center talking about how in the rehabilitation and medical paradigm, that the impairment is the problem versus the dependency on professionals or the barriers in the environment. So this is a basic piece that we teach people. Professional intervention is what's needed in the rehabilitation paradigm versus barrier removal. How many years have we fought to have co-signature on our employment plans with VR and really mean it? And know that we can change it when we want. So individuals with disabilities as a patient or client versus a consumer or a citizen or just Amina. I don't really like that word consumer. I always see a little Pac-Man gobbling everything up. So maximum self-care. Gainful employment that's the goal. Whereas independence through control over acceptable options in daily living. And integrated and the community based. Big controversy in Phoenix because they used HUD dollars to build a housing complex, an apartment complex that was completely outfitted for people who are deaf. It got approved, it got built and everything. People came from all over the country to move into it. And then HUD wanted to pull the funding because, it was not integrated housing. But these, many of them are older adults. They all spoke the same language. They wanted to live in that environment. They settled there's a couple of token non-hearing impaired people living there so they could keep their funding. But that rigid idea about what is integration is not the same for everybody. Here is another Scott Chambers cartoon. There's a doctor talking to a man in a wheelchair. It says, "well we will replace your spinal cord with your vocal cord, you will walk, but you will be talking out your ass. Love Scott Chambers. The devil is in the details of how it gets internalized if we own these stereotypes. Like that is who we are. I have a skin disease. I'm untouchable. I'm unlovable. Right. I'm a failure because I never got cured. I must not try hard enough. I'm lazy because I could have gotten cured. When I grew up I was Godzilla in my book. I never went to Godzilla movies. I was a monster. And sometimes, I mean, I'm, I change color. Anybody know what cuttle fish are. They are magical. I just learned about them just a few years ago on PBS. They change color and texture and shape to match their environment. From a blue flashing neon light to a piece of ruffley coral with no brain and scientists are fascinated. How can they do that? I wish I would have known that years ago. I have as just as fascinating a body but they didn't really look at me like that. They just wanted to stop it, stop it, stop it. I owned a lot of negative stereotypes about how I am, so this information was powerful for me but the stereotypes were put on me from somewhere else. And my parents also it was put on them from somewhere else. Before my mother died, she said to my sister, I just hope she will be okay. She knew the pain I went through as a teenager and then I lived in the San Francisco bay area during the 60s and 70s, so I went a little wacky for a while. Know what I mean? Headed for the hills. Lived without electricity and running water and then I had a baby at home. This failure of a body had a baby and nursed it. It lived off of my milk. Well, that was a life circumstance intervention I hadn't planned on. I had not planned on having children, number one. Cause I didn't want it to be hereditary. Why would I have children? It was a rotten world. Everybody I respected was getting shot for one thing. But also, that was the worst thing I could give somebody was me. Having that baby and having my body work was amazingly empowering. That was my beginning coming back into the world. It took a while. I had a lot to struggle through. About what I thought I was capable of. For one thing, I had applied for Social Security Disability so I was sure I was disabled now and it took a while to think I could be back out in the public and working again. I was also coming back from the Canadian border, not using electricity and running water, so I had to come back. To society, in more ways than one. Sober up, that was another one. How could I live as an adult, sober, with this body. How could I get a baby sober? How could I have a relationship with anybody sober. I had such poor self-esteem. Because there was a lot of brain washing going on with all those looks from those doctors all those years. And all those trips with my parents who gave up money and time and risked their job to take care of me in that way. This liberated me from all that anger at my parents and even some of it at the doctors because they didn't know they are all living in this culture that says this. So here they are with the labels. They are putting labels on Kathy that have some of these words we have been throwing out and then they take those labels, this is Improbable Theater, it is a picture of them spelling person with those words. That was the very first performance that they did. So isolation, feeling left out so we don't show up for things. These are ways that the internalized oppression shows up. Diverse, I don't know if that's the right word. I don't mean we are diverse, I mean we are divisive. Right, we argue with each other, we attack each other. Because we can. Because we have this anger that Stacey talked about, that it is not safe to aim it outside of our group so we aim it at each other and we attack our leaders. We deny that we have disabilities. We try to pass for normal if we can. And we see this all the time with the wounded warrior thing. They don't really identify as disabled and don't want to. Why-who wants to identify with that? Seniors, right now, this generation that was so fiercely independent that is like 75 or 85. They are not going to use a walker. No way. Not only that if you offer it to them they will not talk to you for two months. Instead they will fall and break bone after bone. Because of it. Because they don't want that added stereotype stigma on them. Blaming the disability for everything that's wrong. We have met people who do that. Compulsive cheerfulness. My friend Valerie that uses the personal assistant has talked a lot about that. How honest can she be with her attendants, about her moods. Or they will go away and then she is stranded. Can't get in and out of bed. Can't do any biological stuff. Compulsive misery, life is so miserable. So this is another Scott Chambers cartoon. It's called the victim channel and there is a weather lady there saying "the weather today is really unfair." So, and we have met people who get stuck in this way of thinking. Feeling unattractive or unlovable and feeling that we have no right to exist. That burden. The b word, is the burden. Lack of social skills. Youth unemployment and IEPs. The parents that don't teach their kids that they have a disability. Because they are worried about upsetting them. You know, that they have been in special ed all these years. Oh, that is a new one. Or if I tell them he'll use it as an excuse for everything. Like number one, know thyself. All employers need that. I need you to know what you know how to do and where you need help, if you can tell me that, we can work together. If you don't, it won't last long. Isolation from our allies. We want integration, not assimilation. We don't want to be the same as everyone else, we want to be part of everything whatever we want to be part of. Liberation is an action word. So when you get that this has affected you, you have to step out of it on purpose and it's going to bring up feelings. Remember we talked about feelings. Working on it, taking full pride in our body and our speech, working on our need for assistance and taking pride in being exactly perfect the way we are. Reaching for close relationships with other disabled people across all categories is really important. Counting ourselves in. This is how we can support each other. We cannot do this alone when we are in the middle of it and this is who we think we are. It always takes an ally whether it's a disabled person or a nondisabled person to help us affirm who we really are outside of the oppression. We need to support each other. Now maybe some people have figured this out early on. Tomorrow I'm going to talk a little bit about Andrew Solomon, anybody here know about Andrew Solomon? He has got Ted Talks. And he talks about vertical identity and horizontal identity and it really put some stuff together for me and we will talk about that tomorrow. Being listened to respectfully. To tell your story without any shaming or blaming or [sigh] just relaxed listening. That is what people with disabilities need. They need to be able to tell their stories. We use this when we work with our peer mentors. To let people tell their stories. Let them have feelings. Don't think you have to stop it. When I come up to you Matthew. Can I use you as an example? Can I touch your shoulder? If you are telling me a story and I am doing this, what's that message to you. AUDIENCE MEMBER: maybe pity. AMINA DONNA KRUCK: or like hurry up and get over. Right, as opposed to if I just did this, or can I hold your hand. So touch. Being touched respectfully is a great contradiction to the oppression with permission is really great. Being able to have the feelings. We talked about that. Getting to know other people in our identified community, but not huddling, not only getting to know them. It took me years to have best friends that were people with disabilities. Years at the center. I came to the center because it wasn't working out for me in the mental health system anymore and I was really burnt out and I had a friend who had a fairly new spinal cord injury and he knew I was leading a support group for women outside of my house from co-counseling and he said, I really think you would like this independent living center and they have a job. He had to really push me to apply. Because I had never thought of it. I never knew it existed really and I didn't know what I was getting into, but they hired me, almost over the phone Jerry hired me, because I had the background in co-counseling and he wanted me to really help develop the peer mentoring program, which he had started, and knew that it needed a lot nurturing and I had that long background of doing peer counseling. So I was very lucky that I got led to this path because it changed my life. Nothing about us without us. As we know doing stuff together. And speaking up and out. This is the Arizona capital building. Next time you hear about us, you can visualize what it looks like. Liberation is a group activity. So awareness. Being able to identify the oppression driven thinking and behavior and then we lift as we climb. So we really need each other for this process. That's what you can do. We notice people right, in these chronic patterns. Of - I'm no good, I can't do it, blah, blah. How can we help bounce them out of it? Teaching about oppression theory and helping them get it outside of themselves can be very helpful. And then hearing other people's stories and early memories. When I hear your early memories it starts to give me a perspective on my own about disability and how weird it has been in our culture and what it means to me personally. Knowing the truth out about who we really are. Knowing our legal rights and speaking up about them. So I was telling Jared that, I think it was you, somebody I was telling. That I kept hearing from people at our ADA events where we talked about latest legislation issues and court decisions and stuff, that we needed more time to talk. So this last year we used the video which you might have been referring to Stacey, The Great Race for Disability Rights. It's a great video in some ways. And showing history and it's a teaching video so 15-minute segments. It came ought of "Lives Worth Living" which was a point of view in an independent lens that's an hour and a half. This great race is meant to be a teaching tool and we showed it and then had time for people to talk about it. Integrate it, talk about what it meant to them. I've been teaching ADA stuff for years. And nobody ever said, oh boring, Title I, Title II, Title III. This year, they got into learning it. We played games. We played ADA Jeopardy and people have come up to me after that event and said, now I know and I'm complaining about employment discrimination that Title I. What's that Title again for when it is restaurants and stuff because I'm going to go talk to somebody about something. Somehow they got it because they had that chance to talk about it. I did a little bit of this theory and having feelings and experience it. It's a way for people to get a perspective on it. Only they can do it together. And then training allies. Holding out expectations for them. Who does get out the vote stuff at their center? And do you do stuff for voter, what is it, voter information day or something in September. You do. Is it successful? Does anybody come? Did somebody say yes? If you said yes, get a mic and tell me what's successful about it. No, I didn't think so. It's so important, isn't it. Oh my God, it's so important. How can we crack this nut to get people more interested in voting? We have raised some awareness around it, I think, but boy, voting is complicated in Arizona. We always have propositions on there and they are backwards from what they mean. And the districts. All the things that I assumed people knew about voting that they don't know. And I was not raised or educated in Arizona, so I don't know the Arizona specific stuff, but boy, I just learned they need me to be accessible and ask anything they want, when they want it. Cause it is only when they need it, that they will do it. How can I get them interested in voting? So, you know, we just had an election in Phoenix for expanding the transit tax for lightrail and buses and paratransit and stuff, and we did a lot. Now, that was an issue that got people more interested. Yeah? AUDIENCE MEMBER: The only way we've ever been successful is that – AMINA DONNA KRUCK: Woah, hang on, there you go. AUDIENCE MEMBER: two years ago, we decided during our annual meeting that we were going to have a voter registration drive, so I literally held t-shirts hostage that we had for ages and ages, they were old advocacy event t-shirts. If you register, I'll give a shirt. Well, I'm going to take a registration form for my mom. She's not here, you don't get a shirt. It was literally bribery. AMINA DONNA KRUCK: until you bring it back filled out, right? Anybody else have tips about how they get people to register to vote? In Arizona a couple of years ago we had a law go through to make partial guardianships, if somebody had a partial guardianships, if someone had a partial guardianship they could vote, they could have that as part of it. But if they had a full guardianship, they couldn't. Like if they had a limited guardianship, they could but if they had a full guardianship, they couldn't. But now they can go back to the court and get that added on, so we've been educating people that they can do that, they can vote now. But, this is really a hard one. Strategic planning, plot your path to freedom. So where is internalized oppression holding you back if you want a life you deserve. So I only went into leadership because it was a rational decision to contradict disability oppression, and because I had a support system that encouraged me to do it, and every time I expressed terror they cheered me on and said I must be doing something right. Can you imagine? Did anybody ever tell you that in your life? I remember going with ADAPT to Houston, somebody here, right? We had this conversation, to Houston, it's the only jail I know intimately besides Port Angeles. I was terrified but I wanted to go. My whole life when I was terrified, people would honor the terror, but I had a co-counseling friend that held me and encouraged me and said, I know you don't want to go but you're going to go anyway." And I cried and, I'm shaking now. I have body chills. That changed my life to know that I could be afraid and not want to do something and want to do something and get encouraged to do it? And, of course, I was one of three people that got arrested that year, of course, so I got to live through my worst fear, but now I have that badge of pride, you know what I mean? I'm not really that big of an act visit. I haven't demonstrated that much. In Phoenix we just don't do that kind of a thing as much as we should. It's just too hot. But I did do that. The point was the support made all the difference. For somebody to say if you're terrified, you must be doing something right. So if you're having feelings, something's safe in your life, something's safe enough. I've used that technique before. I've, now I can tell somebody, "You're my friend. I'm going to go do this workshop at NCIL. It's a heart's desire and I'm terrified, and you're going to support me to do it anyway." So on my voicemail at noon when I check my voicemail was my friend who has lived with post-polio since she was like two, on the phone saying I am not calling cause anything is going wrong with me, I know what you're doing over there and I'm just calling thanking you for doing this. I'm really excited that you did it. I set that up. I'll take pride in that. I set that up to share that with her. That kind of really digging in with each other to really know where are our, where are we stopping, like Stacey was asking us and Dolores, where are we stopping ourself at our center? Who are we leaving out? Asking yourself in your personal life, and when you work with consumers, where are you blocked? I was blocked in getting, having a relationship. Once I got sober and, don't take this wrong, but I found out that the lesbian community was a lot like high school. By the time I had the nerve to ask someone out on a date, they were already living with somebody else and I was like, screw it. Unless I can have a relationship with a Martian, I'm just not going to have one probably. I am interested, if anybody knows any Martians or people from other planets. But there came a point in my career at ABIL when I thought, where am I holding back? I've been single for, well, I've been divorced for 20 years from my daughter's father, but really single for like about 15 years probably, and I, and sober, and where am I holding back? I'm holding back with relationships. I know how to be single, I know how to be a leader in the disability community now. Where am I holding back? And I started meeting couples, all kinds of couples, different kinds of couples. People who worked things out in a different kind of way, and I still, after all that, I still have so much embarrassment about my body and how do I present my body to you or, you know, I just really, it's hard for me to even talk about today. You know, like embarrassing, that moment when we talk about my psoriasis. Crazy. I mean, compared to like arthritis, it's nothing. After arthritis, I wasn't held back in my work world from psoriasis, although I experienced a lot of discrimination in the old days about it. But once I was not in so much pain and I could walk again it's like I got to raise this kid and I have to support her and I can't do it on Social Security Disability. I could do that, but this was the last frontier for me. You know, figuring out how to be part of a couple, a loving relationship with somebody, and I really still had this image that I was too much trouble for somebody. And part of it was my temper, which isn't easy to get along with, and part of it was just, I mean, it's weird, right? It's just so weird. It's not really rational thinking. Because this stuff does not produce rational thinking. So that was an area of my life that was not working well. When you meet people where one part of their life is working well and another part is messed up, like I have one friend whose house is so frightening, it's a pig pen and she's a brilliant leader in other areas? How does this happen? It's simple. They have got distress in that area that has not been discharged off. That is what is going on. That is why they are so out of balance. So I set a goal, and tomorrow I'll talk about the commitments, but there are commitments in co-counseling that are not like affirmations, they're like a contradiction to the distress that are reality. So I wouldn't say I'm beautiful. I might say there might be some part of me that's beautiful, some teeny teeny part that is completely and totally beautiful and then shake. You know it's right if you discharge. It's not right if you don't discharge. You've got to laugh, giggle, cry, sweat, burp, yawn, something. Okay? Then you know you're on track. So you need to know that so when people are doing these things and you're talking, that they're not being disrespectful, right? They are really into it. They're integrating what you're telling them right now. It's exciting. You can actually watch it happen. You know, hold somebody's hand and they're sweating like crazy. I sweat, my hand, when I am discharging. And my body doesn't sweat usually. So I'll get on to allies really quick because I know I'm going to run out of time. So I set the goal to be in a relationship, and I told my friends, I by then had met a couple of friends that had really respectful nice relationships. That was another thing, my parents didn't have a nice, they didn't treat each other nicely, and I didn't want to be in a relationship where, I had been in a relationship where I was not treated nicely and I didn't want that kind of relationship and I knew it was possible because I had met couples that had nice relationships. So I'm not going to tell you all the details about it but I eventually did meet my husband, and I did get married, this time it was a guy. Who knows? I always knew I was bisexual when I was a young person. You love somebody, you love somebody. That's how we think. And we have been married now for, since 2001, so 14 years. Yeah. And, oh, it's been really hard at times, really, really hard, like, you know, we met at 50, you know, we're set in our ways, he's quiet and calm and I'm like loud and rowdy and, yeah. But it's been wonderful. A wonderful, wonderful experience because I thought that's what I haven't learned how to do. And we have a very respectful relationship. He's taught me how to be more respectful because of my kind of way of being. Nobody has ever talked to me like this. He says to me are you kidding me? This is the only way anybody talked in my family. I know some of you can relate probably. But that was a rational decision. That was not an easy decision on my part. What kind of role model am I if I am afraid to have a relationship sober? Not a very good one, right? That's how I trick myself into a lot of things. Like most advocates. I'll do something for you I won't do for myself, right? You've got to use these things. That psychology class I took really helped me psych myself out. We are our own best allies, so we need to know each other beyond stereotypes. Get to know more people. And that is what is beautiful about independent living centers. I might be wondering if you do psoriasis as good as me, there is some comparison. But when I meet people with all different kinds of disabilities, it stimulates my creativity to live my own individual life my own way. It's so beautiful and freeing. And we need to appreciate the views and wisdom that comes from complex intersections of various constituencies, so that's a repeat of what we heard earlier today. No one but us can directly understand the experience, struggles and delights of living with a disability, "us" meaning us with disabilities. We can't expect other people to do it. Some of our close people who are really in on it and are able to tolerate hearing what it's really like, we do have those kind of friends and we do that for each other. We need to ensure that every life seen as valuable and worthy. Speak about our own experience without comparing our oppression to others. Assume that you are the expert on your own experience. And that you have information that other people need to know. I'm sorry. It's your job. You got appointed by the universe. Take it on with pride. Your experience is also an experience of victory, so be sure to share those as well. You and all people who are differently abled deserve allies. Your liberation issues are a justifiable concern to all people. So you see I'm talking on the personal side of what we talked about earlier. People in other groups are natural allies. All people outside of your group want to be our allies, and it's in their best interest to do so because they're going to have a disability and they've got people in their lives that have a disability and they're totally curious about it. So let them in and let them be close. Assume that it's only other people's oppression and internalized oppression that prevents them temporarily from being effective allies to you at all times, especially family and friends. Isn't that the place we feel the most betrayed that they don't get it, they can't get it? Assume that your allies are doing the best they can at the present time given their own oppression and internalized oppression and assume they can and will do better. So we accept them, we discharge about it, we go on and we expect them to keep learning. We hold out. We don't let them off the hook. So more expecting perfection from them, assuming that allies make mistakes, be prepared to be disappointed, another feeling. Have it. It's just a feeling and then get through it like everything else. Assume that you have a perfect right to assist allies to become more effective for you. Take full pride in your ability to do this. So explore allies. What we need for allies is for them to explore their own feelings about their bodies and feeling different in any way. Experiences with illnesses. Get a chance to talk to them. Listen to them. Give them that space. Discharge, really, a tip, when you go to the doctor, ask him how his day is going before you have him touch you. Or whether you decide to let him proceed after you hear what he has to tell you, right? Or she. Discharge on what you are told about them, so this is coming from the ally’s point of view and assumption. So early memory work is so great to do, and it's fun and it's quick. Work on early memories. Challenge caretaking patterns and any pull to make things accessible without asking what's needed. Taking risk and try things as you get to know and support a person with a disability. So this again is suggestions for allies. So I am giving this to you so you have this to give to others. Do not assume that you understand the lives and needs of people with disabilities, and I would say that to us, too. Don't assume, I can't assume I know what your life is like. I just developed a thirst to find out about it. I love hearing people tell me about their life. So interesting. Relaxed light listening. That's really important. That's what people need. Feelings are not the hurt, so let them tell you about it. It's such a gift. And interrupt our internalized oppression. So we really need that from allies and we need to teach the allies in our life to do that. Whether they have a disability or not. You can start to- And that list in your packet, there is a list of all those words that came up over the years in different workshops about the stereotype for disability and stigma words. And I go through a workshop and I have people circle the ones that affect them and then pick the top 3 because now then we know how to start working out from there. And we'll talk more about that tomorrow. We need people to support our goals, dreams and ideas touching with permission, I said, have high expectations for us, speak up about discrimination, injustice, inequality and inaccessibility. So speak up as well, not for us but when they notice it, they speak up about it, just like we should when we are doing it. And interrupt stereotypes, disrespectful language and behavior. So that's for allies. And then reminder we need to be allies for each other, and then I have here for you, it's really just www.rc.org, and that's where I got the disability liberation policy that I've gone off of, and they have some different resources on that website, and this is coming from the latest. Updated, I hadn't looked at the, I had been using the old one, the one that was written in, like, 1980 for years and years. It's run a long way with me. The new one has some new information in there but nothing was wrong in the old one. So just having that for you so you can, can kind of see what, if you wanted to know more about reevaluation counseling your co-counseling or their theory. This is just what I learned and I ran with it. I had support from that community, I haven't done co-counseling for, now, probably 20 years because I've been around a long time. Maybe 15 years. But, so the next piece tomorrow morning will be me talking about how have I used this in the center?