00:00:00:00 - 00:00:04:14 Unknown Helping to Heal: Conversations About Trauma-Informed Principles. 00:00:04:14 - 00:00:14:05 Unknown This video is hosted by The Link Center. Improving Access to Mental Health Services for People with I/DD, Brain Injury and other Disabilities. 00:00:14:05 - 00:00:18:17 Unknown This video will focus on collaboration and mutuality. 00:00:18:17 - 00:00:35:04 Unknown ♪ Dearie my dearie we all need a voice, in a world that convinces us we’re here by choice. Soon as rain falls police make sport, of running us from the awnings and ruining our fort. 00:00:35:04 - 00:01:05:16 Unknown Hi, my name's Monica Wafford I, I'm an individual with a disability, and, my thoughts about, collaboration and mutuality are that there are a lot of people in my life who play different roles, and some are my friends, some get paid to help me. But if they're supporting me for cash or if it's just my friendship, they all have different responsibilities. 00:01:05:18 - 00:01:45:08 Unknown But for me, it's about the same expectations. And it's a working relationship, and we both have to work at it. So I'm here with Perri and we're going to talk about what it means, collaboration and mutuality. So, Perri, we talked before about privacy and people who are unsafe supporters. So could you tell me what respecting your privacy from somebody who supports you means to you. 00:01:55:02 - 00:01:58:21 Unknown Respect other’s privacy and the boundaries they set. 00:01:59:12 - 00:02:19:20 Unknown My name is Perri, and my pronouns are he/him. I'm autistic and mentally ill. It's hard to say just one thing about privacy because there's just so much. But the big one is not coming into my space without asking me and respecting no that's what I say. I have had family members come into my room without asking and have seen private moments of my life 00:02:19:20 - 00:02:24:20 Unknown I don't want them to see because they feel entitled to being in my space because they support me. 00:02:24:20 - 00:02:26:05 Unknown Ask permission. 00:02:26:05 - 00:02:52:23 Unknown I have had my mom walk in while I'm masturbating because she didn't knock or wait until I told her to come in, and that's a private moment I definitely didn't want her seeing. Also, if you support someone with self-care or cleaning respecting their space and body boundaries. That means asking if this is a good time to clean and not touching their belongings without asking, and especially with intimate care like showers asking before touching the person and keeping doors closed. 00:02:53:01 - 00:03:03:23 Unknown Just because a disabled person has high care needs doesn't mean they don't have boundaries and deserve privacy. 00:03:04:12 - 00:03:32:12 Unknown That's a good point. And you know, the we didn't say about the way you're communicating is your choice. And you had told me before that sometimes that's because your communication can be unreliable and not really say what you're meaning. So to be able to take your time and get your thoughts out is important. 00:03:32:14 - 00:03:54:03 Unknown Also, Perri, when anybody is supporting you, I think privacy is one of the most important things. It's just it's, it's something about dignity and respect that makes it better to share collaboration. Like I said it's it's work between both of us. 00:03:59:22 - 00:04:03:21 Unknown Build trust and safety by respecting people's choices. 00:04:04:11 - 00:04:26:01 Unknown If someone doesn't respect my privacy and boundaries, why should I feel safe? Why should I let them help me? Just because they might be the only option. And we just had this shared learning group about risky behaviors. Not feeling safe and respected is a huge risk factor for aggression and self-injury. Why should I listen to you and trust you to help me when I'm hitting my head and having meltdowns? 00:04:26:02 - 00:04:35:18 Unknown If I can't trust you to not come in my room unless you have permission. 00:04:36:02 - 00:05:10:10 Unknown Exactly. And what you said about the power dynamic between supporters and caregivers and ourselves. You know, it's not that they're there to tell you how to live your life or what to do. It's there to support you. And trust is a big part of getting somebody to help you and support you. 00:05:10:12 - 00:05:40:16 Unknown It's like you said before, Perri, you know I'm not here to control you. You have a right to live your life just like any other adult. You have a right to make your decisions, and you have a right to even who you want in your personal space. In other words, like you said, you have a right to feel safe. 00:05:40:18 - 00:05:50:12 Unknown Is there anything that's been good about the relationships that you've had with people that support you? 00:05:51:23 - 00:05:58:14 Unknown I'm not sure. I got, like, it's really kind of 00:05:58:14 - 00:06:08:20 Unknown scary, to be honest. Like, rely on someone for support 00:06:08:22 - 00:06:13:09 Unknown who doesn't feel safe. 00:06:13:10 - 00:06:39:21 Unknown Like, and it's really confusing because, like, one moment my parents are, like, coming to get me like, because I got, I got in a car accident and, like, they're being, like, super nice and, like, not making. And then there's like, another moment, like, 00:06:39:23 - 00:06:48:06 Unknown where they like, nagging me for like, not, not 00:06:48:08 - 00:07:21:05 Unknown Not cleaning my room or not doing this or not doing that. And, I know like, that just sounds like normal parenting is like, oh, they're nagging me because you're not cleaning in your room, but one I'm an adult, and two, I'm a disabled adult. Like. Yes. No one likes cleaning, but, like, it feels like they're not seeing like, the additional barriers that exist for me as a person with a developmental disability. 00:07:21:07 - 00:07:27:01 Unknown And I don't use my device around them because 00:07:27:03 - 00:07:33:07 Unknown they don't feel safe and I don't. 00:07:33:09 - 00:07:41:19 Unknown Like, I've had like this was just like, I think it was like less than two months ago. My mom was like 00:07:41:21 - 00:08:03:09 Unknown telling me, oh, we're late, we're late, we’re late. And then I was trying to do something, but I couldn't tell her what I was trying to do. I was having surgery and I was trying to, like, print out, like a post-surgery, like communication board. But I ran out of time. I couldn't tell my mom what I was trying to do because with my mouth my words weren't all there. 00:08:03:09 - 00:08:34:22 Unknown I was just I was just saying, I don't know, I don't know, I don't know, I don't know, I don't know, because that's the only thing I could say. And then my mom started yelling. At least that's how it felt to me and saying, use your words. Like, I don't know how to balance that. Like, I don't know if what's happening is bad or not because, like, sometimes this happens like 00:08:35:00 - 00:08:43:23 Unknown and it's upsetting, but also most of the time they're really nice though is what, what's happening really bad? And I just get so confused. 00:08:44:01 - 00:08:50:02 Unknown What do you think that they could do to hear you better? 00:08:50:02 - 00:08:57:13 Unknown I it's kind of, I don't know. Give me a second. 00:08:57:13 - 00:08:58:20 Unknown Take your time. 00:08:58:23 - 00:09:01:16 Unknown 00:09:03:04 - 00:09:09:17 Unknown Honestly, it's just so hard to communicate with them my needs and boundaries. Because partially, they don't feel receptive. 00:09:09:17 - 00:09:14:03 Unknown Understand how someone communicates and respect what they say. 00:09:14:03 - 00:09:31:20 Unknown But also, I have post-traumatic stress disorder, and that makes talking to any authority figure extremely difficult. I don't know how to bridge the communication gap because it feels like a huge canyon. I don't even know where to start. And my parents haven't tried to get to my end either. 00:09:31:22 - 00:09:55:07 Unknown At least I haven't seen them trying. And why is it always the disabled persons job to bridge the communication gap and advocate and say no? Especially when the environment is already set up to make the person saying no feel unsafe or like something bad will happen if they say no. Like saying no as a disabled person is scary because the stakes are so high, especially if the person is unsafe. 00:09:55:09 - 00:10:11:22 Unknown Like if I say no, now's not a good time to clean my room, I'm watching cartoons. What if the person doesn't help me clean later because you said no earlier and now you have to do it yourself. It feels like drowning and I try to swim, but it's the middle of the ocean and no one is there to help me 00:10:11:22 - 00:10:17:18 Unknown out of the water. 00:10:17:22 - 00:10:20:23 Unknown Perri, how often do you feel like that? 00:10:31:15 - 00:10:33:15 Unknown You can say percent. 00:10:33:15 - 00:10:38:11 Unknown I'm not sure. I need to think about it. Give me a second. 00:10:38:11 - 00:10:39:12 Unknown Sure. 00:10:53:06 - 00:10:57:11 Unknown I guess 00:10:57:13 - 00:11:06:08 Unknown it kind of feels like that 00:11:06:10 - 00:11:24:19 Unknown almost all the time. Like it's just changes. Like sometimes it's like a storm and the water is like, super angry. And then sometimes it's like, calm but I'm still, like, in the water. 00:11:24:19 - 00:11:35:18 Unknown I don't want to cut them off or, like, go completely no contact. I just don't want to be like, feeling like I'm being controlled by them every day. 00:11:35:18 - 00:11:38:14 Unknown Yeah. I have to say this. I have 00:11:38:16 - 00:11:41:00 Unknown Teach people how to say no. 00:11:41:00 - 00:11:48:03 Unknown I have to say this one last thing because, (sure sure), if you want it in the video, but my when remember when we were talking last time? 00:11:48:03 - 00:12:12:03 Unknown Like I was saying, it's like a thousand times more important for people to be able to say no than it is to them to be able to say yes. And when we think about that when we're like teaching people communication skills. Like, yeah, no, it's huge. It helps people self-advocate. Disabled people have been taught how to say yes to everything our whole lives. 00:12:12:05 - 00:12:17:03 Unknown What we need is the skills to be able to say no. 00:12:17:03 - 00:12:22:13 Unknown Exactly. Say no and mean it. And that's okay. 00:12:27:12 - 00:12:38:21 Unknown Special thanks to Monica Wafford and Perri Spencer for sharing their personal stories, thoughts, and profound experiences to help improve the lives of those who have experienced trauma. 00:12:38:21 - 00:12:47:01 Unknown The Link Center improving access to mental health services for people with IDD, brain injury and other disabilities. 00:12:47:01 - 00:12:52:10 Unknown With heartfelt gratitude to Alyssa Johnson for permission to use her powerful music. 00:12:52:12 - 00:13:07:20 Unknown She says, I forget who it was that said torment makes great art, but I feel like this statement is true. Music is a functioning, healthy coping mechanism I use to handle my trauma, and it has the same effect on the people around me. 00:13:07:20 - 00:13:15:15 Unknown The Link Center improving access to mental health services for people with IDD, brain injury and other disabilities. 00:13:15:15 - 00:13:48:14 Unknown ♪ Dearie my dearie we all need a voice, in a world that convinces us we’re here by choice. Soon as rain falls police make sport, of running us from the awnings and ruining our fort. Oh won’t you save me, save me from the things, that were supposed to save me. me.