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Disability Isn’t the Problem—Trauma Is: Dignity, Disability and Trauma-Informed Practices
34 Plays11 days ago
Dr. Karyn Harvey Ph.D. and Author of Positive Identity Development
In this powerful episode of The DIVERG. Podcast, we sit down with Dr. Karyn Harvey—a renowned psychologist, author, and leading voice in trauma-informed care for individuals with intellectual and developmental disabilities. With over 35 years of clinical experience, Dr. Harvey has dedicated her career to shifting the way we think about disability, trauma, and healing.
Together, we explore what it really means to center dignity in support systems, why trauma—not disability—is often at the root of challenging behavior, and how practitioners, families, and educators can create environments that foster true connection and emotional safety.
Dr. Harvey’s work challenges us to move beyond behavior-focused interventions and instead focus on identity, community, and the basic human right to a meaningful life. Whether you're a parent, professional, or advocate, this conversation will leave you with a deeper understanding of how trauma-informed, person-centered care can change lives.
Dr Harvey’s Website
The Alliance Against Seclusion & Restraint
Recommended
Transcript
Transformative Power of Belief
00:00:00
Speaker
that staff like no believe in people and because this guy completely transformed once he had a job and we all have stories like this I have you know so many stories a hundred stories of folks who once they got a job or they got a relationship or they just got ah a chance to live differently they didn't have those same behavioral issues anymore because they saw themselves differently and they were able to just step into this role and this identity you know that they felt proud about
00:00:33
Speaker
Welcome to the Diverge podcast.
The Mission of Diverge Podcast
00:00:35
Speaker
Inclusive of autistic and other neurodivergent voices, we exist to bridge the gap between specialized knowledge and everyday parenting. We are on a mission to bring together the most forward-thinking experts who are deep in the trenches, championing neuroaffirming and developmentally based approaches to therapy, to education, and life.
00:00:54
Speaker
Designed for parents, educators, friends, and allies. Conversation by conversation, insight by insight, We are building community and making space for all kinds of minds. I want to begin this episode by acknowledging what a profoundly difficult week it has been for the autistic community.
00:01:11
Speaker
While we often use this platform to highlight capability, today it feels more urgent than ever to affirm something even more fundamental, the right of every autistic person to simply exist. If the word neuroaffirming means anything, it must begin with the belief that autistic lives are inherently valuable and that when stories are told about autistic people, especially by those outside the autistic community, they deserve to be represented with respect, dignity, and truth.
00:01:38
Speaker
At Deferge, we are committed to ensuring the progress made by the disability community is not erased or undermined by harmful rhetoric or policy. We will continue to unapologetically center autistic voices and elevate those who deeply believe in the humanity and worth of this community.
Exploring Dignity and Trauma-Informed Care
00:01:52
Speaker
In the days and weeks ahead, may you find comfort in knowing that as long as we have a platform, we will use it to push for a more just and affirming world for all disabled people. And what better place to start than with a conversation on dignity, disability, and trauma-informed care.
00:02:08
Speaker
This is a rich conversation with a lot deep insights from what I often call the other side, those working with adults in the community. So let's jump into it.
00:02:19
Speaker
All right, and we are live. So today we have Dr. Karen Harvey on the podcast, and she has worked in the field of disability and focused specifically on trauma in the last few years. So I'm really excited to have this conversation with her um and dive really deep into her work and what she's seeing and where change is happening. So I'll let her introduce herself.
00:02:43
Speaker
Oh, thank you, Christy. I'm excited to be here I'm excited. i you know, many years ago, i found my people. And I've been working in the field ever
Dr. Harvey's Journey into Trauma and Disability
00:02:55
Speaker
since. I am a mic.
00:02:57
Speaker
And i I just there's such joy in working with folks with intellectual and developmental disabilities. And I've learned so much from them and from the people who get them.
00:03:09
Speaker
Right. And family. And i I it's been just a privilege to do this work. Amazing. Love hearing that. So what initially drew you to the field?
00:03:21
Speaker
Well, you know, I was actually wanting to be a writer and that didn't go very well because I was, i had this romantic notion, right? I was waiting on tables and writing a novel, but the novel was horrible.
00:03:37
Speaker
Yeah.
00:03:39
Speaker
Even my friends had to agree. So, you know, I realized I had nothing to write about. So I said, well, I'll go get my master's in psychology. I'll be a therapist and I'll know more and have more things to write about, which is a horrible reason to go into. That's that's amazing.
00:03:56
Speaker
It's just terrible. So no big surprise. I wasn't a very good therapist. and and And I also felt like i I really didn't know how to help people. They didn't give us a lot of tools then. And, you know, I just didn't feel equipped.
00:04:11
Speaker
So i I just kept looking for jobs because I was single and broke it had to make a living. And I I um worked with the homeless for a while, but that was so upsetting because we have so few resources. And I would say it's changed, but it's actually gotten worse.
00:04:28
Speaker
Yeah. and And I felt just, again, ineffective there.
Recognizing Trauma in Disability Care
00:04:32
Speaker
And then I just randomly started working at a place called Maryland Homes for the Handicaps, one of the first agencies in Maryland that it opened up to support people who were coming out of the institution.
00:04:45
Speaker
um Because back in the day, um everybody, just about everybody was either in an institution or in the family home and often being hidden in the family home because families were told by their doctors, you really should put them in the institution.
00:04:59
Speaker
Right. So these guys came to us and had a lot of trauma. And I didn't really understand the level of trauma or the complexity of it. We didn't know anything about trauma back then.
00:05:12
Speaker
We just attribute it to veets Right. yeah oh Yeah. People who went to war have trauma. They have PTSD. Yeah. We didn't know. And so, you know, I started working with folks and I was told by my supervising psychologist that I couldn't do therapy with them.
00:05:30
Speaker
And I was saying, but these people really need therapy. Yes. like I can really help. And I really wanted to. And it became so clear to me that their needs were not about having behavior problems. They were about their mental health and the trauma that they'd been through.
00:05:48
Speaker
And so I started doing therapy on the sly. Like, Camita, how are you doing? Listening to people, are you feeling better today? Tell me how you're feeling. And people would pour their hearts out.
00:06:00
Speaker
And I went back to school and got the PhD just so that I could start doing therapy. And then I was also able to supervise other people in doing therapy. And we just heard one trauma story after another. yeah So much sexual abuse.
00:06:16
Speaker
yeah Oh, goodness. So much physical abuse, emotional abuse, bullying, the bullying, right? Every parent knows, right? And just so many folks were just traumatized by being excluded and marginalized in their lives.
00:06:32
Speaker
Right. Yeah. So then I started researching trauma and trying to find out more. And I got trained in in different types of trauma therapies, really focused on EMDR, which is wonderful from Princeton Shapiro, eye movement desensitization and reprocessing.
00:06:50
Speaker
And I have actually done that now for over 20 years and done it with folks who are non-speaking.
Therapeutic Approaches to Trauma
00:06:57
Speaker
That's amazing. Yeah. And I have found that if we can really support people on two basic levels, number one, therapeutically, but also training the direct support staff.
00:07:11
Speaker
Yeah. Training that staff and understanding trauma and being a safe person and being a supportive person, rather than thinking they have to fix and control someone, supporting them.
00:07:23
Speaker
nurturing, caring, those are the staff who are successful. And if we can train staff and the soft skills that are needed to really make someone feel safe, people blossom.
00:07:33
Speaker
Yeah. No, that's amazing. more So that's kind of my journey. Sorry, i I talk so much. No, I love it. um I did not realize. um So I'm a big fan of EMDR.
00:07:46
Speaker
ah My son's a little younger, as are his friends. um But a friend of mine and I who are therapists talk about that a lot. It's like there needs to be more tools for sort of helping them process there were or reprocesses it maybe process our world or reprocess it.
00:08:01
Speaker
Um, because when something gets stuck and you don't have the words, like what do you do? Like, you know what i mean? Like how do you get it now? Yeah. yeah It's so important. I I've also done a lot of expressive therapies.
00:08:14
Speaker
Um, I, I think we have to go deeper with people and then it helps so much. um I've done a lot of work with with um ah what I call the positive identity development. I have a series of workbooks on my website that are all free that anyone can use with people. You don't have to be a therapist, but it's nice to do therapeutically as well on KarenHarvey.org just to build up a sense of self.
00:08:41
Speaker
Yeah. Yeah. you know And to help people to really see themselves in ah in a brighter light, not the person with the disability, but the person who has a life and has wonderful gifts to offer.
00:08:52
Speaker
Yes. you know So I've been focusing on that as well through the years. Love it. No, that's, that's amazing. I think, you know, it's funny when trauma comes up and deviate from the script a little bit. I think trauma is a hard thing for people to wrap their heads around sometimes.
00:09:06
Speaker
Right. Cause we have everything from my two year old has trauma. If I tell them no to, to, to like really big trauma. And I often find in the world of disability, it's hard to help people understand, like to what your point, what looks like behavior is sometimes very much a trauma response.
00:09:27
Speaker
exactly Yeah. And ah do you have any tips for people, especially with younger kids? Like, what are you looking for? right Well, you know, i think you can just assume if your child has a disability um and has, has struggled in some way that they're sorry to say there is a level of trauma yeah and trauma.
00:09:48
Speaker
I think that you can look at a lot of the, Behavior is communication, which we all know. But more importantly, how can we listen better? How can we open up their life so they have avenues of communication?
00:10:05
Speaker
Right. Yeah. You know, because they're telling us something. And and i I never assume that anything is just a manipulative behavior or being done with an intent to get something.
00:10:18
Speaker
At this point, I assume that most people behavioral issues are emotion-based, many are trauma-based and people are frustrated. People are not feeling understood. They're often not able to express what they need.
00:10:33
Speaker
And, you know, if we can get better in trying to understand what they're telling us and understand what those needs are and give that support, then we see less behavioral issues.
00:10:47
Speaker
You make a great point because I've seen this a lot and I talk about my kid a lot because that's like my experience. But um we, you know, he was in programs from like age three until we pulled him in like first grade to start homeschooling.
00:11:00
Speaker
And one of the things about him with an autistic profile was that for a very long time, he was a very chill kid. And it took me a really long time to realize that some of that wasn't just my like, go with the flow kid. It was a kid who had learned to shut down because, because there were so many things that were so confusing and so anxiety ridden and coming out has been a really interesting ah journey as well, because with it, it's like when he can express himself, it sometimes, you know, shows up as behavior and you kind of have to navigate it, but it's,
00:11:37
Speaker
I think people really like don't always understand how the the varying ways trauma can show up in that respect. What a great mom you are to have that kind of insight and to go deeper and look deeper. That's just good for you. you What a great mom, because exactly we we don't know and no one us a blueprint for parenting our child.
00:12:01
Speaker
Right. Parenting is so tough regardless. And then to parent a child, who has a different way of of being is is so challenging, right? There's no blueprint.
00:12:13
Speaker
But to have gone deeper like that and really figured out what was going on with him and then give him that support, that's really wonderful.
Mental Health Needs and Misunderstandings
00:12:20
Speaker
Yeah. and And to the credit, too, of we've had some amazing therapists, one in particular just started a few months ago, who was like, oh, no, we have a kind of, are you familiar with PDA?
00:12:30
Speaker
I think I asked you that. Yes. Yes. So that's kind of how it shows up in certain respects. And we had this one amazing OT recently. Who's like, don't force him to do anything. She's like, I'll scatter stuff around the room.
00:12:42
Speaker
And then one day, like after a couple months, I got the cutest, most excited text. She's like, oh my God, he came in and I had an activity and I told him what to do. And he did it. she's like But I never would have gotten there if I was like, I know you never would have gotten there, dude. forced it because so and it's so much about trust like that's what we're seeing it's like he needs to know he can trust you and then he'll do thing or you know your way however it sort manifests so it's getting better out there yeah it really is about trust that
00:13:13
Speaker
That's brilliant and so important and we really need to get the word out, right? I know. Yeah, exactly. um jumping back into script a little bit, one of my favorite questions to ask people um is knowing what you know, having done what you've done, if you could wave a magic wand and change anything about your fields, about the way the world views disability, what would that be?
00:13:34
Speaker
Oh, I would change the lack of mental health supports for people with IDD immediately. Right. and and And folks on the spectrum as well. i you know, I try very hard to offer trainings to therapists and I just did one recently just to give people a comfort level because it's not different.
00:13:55
Speaker
You just have to go a little slower, take your language lower, yeah be a little more ah concrete and do things maybe on, on different levels, right? Like right expressive therapies, use different approaches, but it's not rocket science. Right.
00:14:13
Speaker
And the more we can get the mental health supports into our field and broaden it so that every issue isn't looked at as a behavior, I think the better we will do.
00:14:24
Speaker
Right. Yeah, agree. Well, and one of the things that you know that's popped up too, as I see this all the way across, and so because I'm coming through the lens of autism, my son has never done private ABA, but he's been in programs already.
00:14:37
Speaker
where like in school, for example, if something was happening, like their go-to was to ignore it. And I always got kind of frustrated because I'm like, why my kid being denied? Like,
00:14:50
Speaker
ah like logic reason, like, oh, no, you might be frustrated, but you can't do that, do this in set. Like it did just wasn't the go, it felt like all of the social emotional pieces were sort of stripped away because of how behavioral the approach was. And it was frustrating because that's not what was happening at her house.
00:15:10
Speaker
Yeah. gotta be hard. It's gotta be hard. And no human deserves to be ignored. And that that's our response when you're trying to communicate Right. When he's trying to communicate, and maybe it's not the way you and I communicate, but he's trying to communicate.
00:15:26
Speaker
for the response to be, I'm not listening, I'm deliberately not listening, and right and I'm going to teach you not to communicate, basically. Then no wonder they shut down. Yeah, and don't use their words in certain places.
00:15:39
Speaker
No wonder. Yeah, no. But I think it's interesting that the mental health and people you know make fun of the the gentle parenting like trend. It's like at the end of the day, i know I do too.
00:15:52
Speaker
It's like at the end of the day, I'm like, you're just trying to make sure that under damn that they that their feelings are valid, even if they can't have their way in this moment. Like that's all it is. Yeah, exactly. Exactly.
00:16:05
Speaker
So amazing. So we did talk about this a little bit, but maybe a little bit more in depth. What are some of the unique ways that trauma presents itself in individuals with intellectual disabilities or delays?
00:16:17
Speaker
Well, I've seen a lot of people have have one of the four symptom areas, right? We have re-experiencing where you sometimes see people in a loop where they're constantly talking about someone who died or they're perseverating on a negative situation that occurred.
00:16:35
Speaker
And some people say, well, you know, they just have to stop doing that. They have to stop. i had somebody approach me the other day. How do I get someone to stop ruminating? No, that's a trauma response.
00:16:45
Speaker
Right. And that's the... symptom area of re-experiencing where um the past is present. So people get stuck in a loop of re-experiencing and re-experiencing and they really need support.
00:16:58
Speaker
I believe very strongly when there's any kind of loss, people need grief therapy. I have something on my website called the goodbye book, which we've used for years just to help someone process who they've lost.
00:17:10
Speaker
And sometimes losing someone can even be just losing a staff person Or losing a friend, you know, yeah um you there's so many losses. And we have to help people to process that. And we often see that trauma symptom of re-experiencing.
00:17:26
Speaker
The next one being arousal, I'm sorry, um avoidance. Let me talk about avoidance first, where we see folks to really have phobias or sometimes I've worked kids who didn't want to go to school anymore after they were restrained or secluded.
00:17:42
Speaker
There's a wonderful organization, Alliance Against Restraint and Seclusion, and they they really speak out about that. But I've seen kids and work with kids who were so traumatized that they were refusing to go to school. Right. Yeah. The avoidance becomes so strong.
00:17:58
Speaker
Yep. And sometimes people have rituals or obsessions and they get a diagnosed with an obsessive compulsive disorder when really they're just trying to keep safe through those rituals and those things that they're doing.
00:18:13
Speaker
So that avoidance, then we have the negative alteration, cognition and mood where we sometimes see this sense of, impending doom or a sense of shame. I've seen this so much with so many people I've worked with, like bad things happen to me because I'm a bad person.
00:18:29
Speaker
And people kind of have turned on themselves, right? And have this kind of self-hate and shame. And that's heartbreaking. But I see that a lot in the disability community. I have folks that I work with who, you know, when I say, how are you doing? They want to tell me all their behaviors and everything they did wrong.
00:18:47
Speaker
aye No, I don't want to know about your behavior. I want to know how you feel. And it's so hard for some people, right? yeah They want to say, well, I was bad last week. No, you're good. just yeah How are you doing?
00:18:59
Speaker
Right? Because of that sense of shame and identifying by their behaviors. And then the last symptom we see so much of the hyper arousal, right? Being in that aroused state where that brain, the trauma brain is flooding them with amygdala ah the amygdala, the amygdala is flooding them. Sorry. with from Let me say that again. Their trauma brain yeah activated and their amygdala is firing danger signals and they are flooded with adrenaline and cortisol and and it's going through the vagal nervous system. Yeah.
00:19:33
Speaker
They are in a hyper aroused state and then you see aggression, you see property destruction, you see people running off, you see all kinds of things that we often label as a behavior problem. Right. And really they're triggered and they're c freaking out.
00:19:48
Speaker
yeah if Their brain is telling them they're in danger. yeah And this isn't manipulating because often they just have negative consequences as a result. This isn't something that moves their life forward.
00:19:59
Speaker
And the negative consequences are do absolutely no good in changing the behavior. We know that from research. Punishment does not change behavior. But maybe they end up being restrained or maybe they end up being suspended or losing privileges.
00:20:13
Speaker
But they were in a hyper-aroused state because trauma. yeah Not because of trying to get something. Right. No, it's so interesting. And it's it's really hard to help people. That's a hard thing to communicate.
00:20:29
Speaker
And I've said this before on the podcast. So forgive me if you're listening. But what I find is so... dire right now in the disability world is that we're coming to grips with the fact that like behavior is not the be all end all, but like the whole world has so far to go in that
Leadership in Trauma-Informed Practices
00:20:46
Speaker
conversation. i like it's It's a mainstream conversation too. ah ah So that's, what's so interesting. It just feels like it needs to speed up over here.
00:20:55
Speaker
ah So was going to say? Yeah. So what do you, I guess this is a good question because we talked about a lot this. What do trauma-informed sort of behavioral interventions look like in and practice?
00:21:09
Speaker
In practice. Yeah. In practice is a great, great thing. So in practice, I think it's helping people to feel safe. I always talk about three things. I have a little triangle that people have to feel safe.
00:21:22
Speaker
They have to have connections and they have to have empowerment. Yeah. these three pieces have to be in place. And if they're not feeling safe, they have to know how to ask and how to express that.
00:21:36
Speaker
know, people need to feel safety is an emotional issue. Right. They don't feel safe. If it's a a child who doesn't feel safe with a teacher or an aid, they need to be able to express that and to be heard.
00:21:48
Speaker
um Adults with staff and with ah whatever work situations to be able to express it because we need to feel safe and then to not be isolated, to have connections And connections shouldn't just all be paid, right? To have relationships, to have friendships.
00:22:06
Speaker
I believe that adults should be able to have, ah to marry, to have significant others, to have all kinds of relationships that they choose and to get support in having that and support in having the life just like the rest of us have.
00:22:21
Speaker
Right. yeah Isolated in group home settings and not allowed to marry or not allowed to date. Or sometimes they're, They're dating, but they actually never get to be in each other's rooms.
00:22:33
Speaker
Oh, wow. Yeah, I'm not familiar with that. For people to be able to get married, and in my experience, often it's only the ones who fight the hardest for themselves that really are able to make that happen.
00:22:44
Speaker
you know Maybe the 2% most people.
00:22:48
Speaker
yeah agencies that I've worked in are married and the rest are just kind of resigned. yeah and And people need support and social skills, but having connections that are not paid friendships, relationships,
00:23:02
Speaker
And then to have real power in their life, a voice that's heard. Yes. To be safe, to have relationships that are real and unpaid and true, and to have a voice that is heard. And power and choice that's real, not just fake and not just on a piece of paper. Right. Yeah, absolutely. Well, and I think that's, you know, that's always a fun conversation. Fun. don't know if that's the right word. In the mental health field is that people, like there's so much...
00:23:30
Speaker
just for chat in general, like if I'm struggling with my mental health choice and realizing I have a choice in whatever situation is difficult is paramount. You almost can't get out of those slumps. And it seems like it's often denied to people who are disabled for whatever reason.
00:23:48
Speaker
Like it's just not. because you care about Yeah, we know better. Right. Um, why would you, why would you need choice? No, that that's amazing. Um, So talk a little bit about your book, Positive Identity Development.
00:24:03
Speaker
um What is it and and why is it so important for people? Oh, that was my first book. Yeah. Thank you for asking. Yeah, NADD published and yeah you can get it on their website.
00:24:15
Speaker
But and. don't get it on Amazon because it's, there's, there's not a lot printed. So it was like cost way too much, but that book, I, after years of working with people and realizing that so many folks just looked at themselves as less than others or as the problem or as the behavior problem, there's so many ways that they identified themselves as someone who didn't fit in and wasn't good enough.
00:24:45
Speaker
And it just, became so clear that that was the work that needed to be done more than anything is helping people to have a positive sense of self. Yeah. You know, humans need that.
00:24:57
Speaker
Right. and To really believe in themselves and see themselves and in a positive light. So that's where I developed the workbooks and that it's, I developed it as a therapeutic approach, but it can be used by anybody just to help folks. Yeah.
00:25:11
Speaker
yeah to move forward, right. To be able to believe in themselves. And then when you have that belief in yourself, you can find the courage to try new things and and be in a relationship and do things differently.
00:25:27
Speaker
But when you're thinking, well, I'm not like everybody else and I'm less than, then it's very hard to do anything for yourself. Right. Yeah, no, that's amazing. Well, and what's so interesting about this conversation is I feel like to an extent, you know,
00:25:41
Speaker
I've often had a lot of like theories about, but about our kids, you know, my son's still really young and I'm like, well, X, Y, Z doesn't make sense. Like, how is he supposed to like have, you know, a good sort of internal grounding in who he is. If like we're doing, you know, this and that in therapy, I've always like kind of, but hearing you talk about it, ah having like looking back,
00:26:02
Speaker
with individuals who've like been through the system for so long is really inspiring because it's very much aligned. But then also too, how much does, do you feel like our own fear and history around disability plays into this?
00:26:21
Speaker
Oh, isn't that a wonderful point? Yeah. and Christy, hit the nail on the head, the ableism. Yep. And ableism penetrates so much. Yeah.
00:26:32
Speaker
Even like you said, even our own perspectives. Right. I know. ah There were years when I thought, okay, this guy is so involved that he won't be able. And it was the staff that taught me, no, this guy can work. yeah no We all said, no, he can't work. Oh, he has such behavioral issues. as One guy, Jason, i always think of that, oh, he had set fires and now he can't be working at a job.
00:26:56
Speaker
Well, he hadn't set a fire for a long time. but yeah And he was doing really well. And this one staff person really believed in him and helped him get the job. We were all like, don't, don't do it.
00:27:07
Speaker
yeah And I learned from that staff, like, no, believe in people. And because this guy completely transformed once he had a job. I have stories like this. I have, you know, so many stories, a hundred stories of folks who,
00:27:20
Speaker
once they got a job or they got a relationship or they yeah just got a chance to live differently, they didn't have those same behavioral issues anymore because they saw themselves differently and they were able to just step into this role and this identity that they felt proud about. Right.
00:27:39
Speaker
Yeah. No, that's an but that's an amazing story. I love that so much. um Yeah. I think there's a lot lost in translation around disability and the history of institutionalization and how much that carries over.
00:27:50
Speaker
It's like even as parents, like our fear that our kid's not going to be ready in the right way for the real world. And who can blame a parent because you get so many messages.
Fostering Growth and Joy in Disabilities
00:28:00
Speaker
So many. Yeah.
00:28:02
Speaker
and and And, you know, I think for so many decades, the biggest mistakes were made listening to the professionals. Right. Yeah. yeah Put your child in an institution or you know, ah so many things, right? Or, so hey hey, how about, you know, oh, you have a positive amyocentesis for Down syndrome.
00:28:22
Speaker
You should have an abortion. No, you shouldn't. Not if you want a joyful life with a wonderful person. ah I know, right? ah whoa Well, and I say that about, so Down syndrome a conversation.
00:28:35
Speaker
I say that about autism a lot too. Like, you know, when you tell someone you have an autistic kid that you can kind of see the look in their eyes and I'm like yeah do you have any idea how much fun my kid is I was like if autistic joy goes away Pixar is going bankrupt period end of story like these kids are so fun exactly and joyful right that joy yeah that's so funny um Um, so in, in trauma informed behavioral interventions, one of the things you talk about, which we talked a lot about now is that when individual recovers, their behaviors change.
00:29:13
Speaker
Um, but more importantly, that happiness can be begin. Uh, so can you expand on this? Like what's kind of the through line between creating that safety and getting them through it? And then the other side. the happiness is the most important thing, right? Yeah.
00:29:26
Speaker
I think if we put the same amount of energy we put into trying to fix people or teach them how to change their behavior and do better, if we put that same amount of energy and into helping them find their joy and their bliss and their strength and what they love to do and develop relationships and have a meaningful life, I think um people would flourish.
00:29:48
Speaker
I have something on my website called the happiness assessment. Yes. Where i really encourage people to follow their bliss, you know, and I have in every behavioral plan that I've ever done or that I've had to sign off on right yeah trauma informed, but we always have after a functional assessment, we have a happiness assessment.
00:30:09
Speaker
yeah Oh, I love that. Yeah. And so everybody's happiness is listed. What makes them happy on five different levels, according to Martin Seligman, right? yeah Passive happiness, engagement.
00:30:21
Speaker
relationships, achievements, and then meaning and purpose. And then we have a procedure, like how are you going going to support this person to be following their joy, to find their happiness and then elaborate on it and find more happiness.
00:30:36
Speaker
Right. No, I love that so much. We all need it. Yeah, no, we totally need Well, and what's interesting is I do work with, I'm very, anyone who knows me, it' very skeptical ah about ABA because I have a PDA kit and it usually doesn't work, but there's one A group of BCBAs who are trying really hard to change things. They're autistic. Some of them have PDA themselves.
00:30:57
Speaker
And they always talk about values-based. Like before you sit down and you set up like goals for a kid, you need to understand their values, like what motivates them. And I love the happiness version of that as well. to me I love that.
00:31:10
Speaker
Yeah. ah it's And it's funny, you know, what i first when I was first asked, like, okay, well, what is your kid value? And I had a decent idea, but it's not a question that a lot of people will ask you. And I'm like, no, he definitely values independence.
00:31:24
Speaker
what You know what I mean? Yeah. So hope that's amazing. Such a cool tool. um And then from the newest book, Trauma and Healing um the Lives of People with Intellectual but Disabilities.
00:31:37
Speaker
ah What are your some of your favorite tools and exercises for the book? Oh, thank you for asking. yeah um So I have a ah series of social stories. And, you know, I think adults need social stories. We had so many social stories for kids.
00:31:53
Speaker
But I have social stories about the death of a parent about and discussion questions. And there's a series of stories around each topic. There's there's um encouragement about the topic, like how to deal with that. And then there's discussion questions. Yeah.
00:32:09
Speaker
So that's something new. i have all the workbooks and I have different therapeutic techniques, but the stories for adults are something new that I've been doing so that anyone can sit down, read the stories with them and then have like these in-depth conversations.
00:32:27
Speaker
That's very, that's actually really cool. You know, because people need that. Absolutely. That's amazing. um I love those tools and i'm but I'm bad at making social stories, but when they exist, I really like them.
00:32:38
Speaker
um Yeah. Um, i love there's a about love about yeah relationship about being dumped, you know, good and bad. Yeah. Amazing. That's my favorite. Thanks for asking. That's like so cool. I love that. Um, and for anybody listening, I'll link all of Karen's books and resources in the show notes. So you can, you can get to them easily.
00:33:00
Speaker
um Thanks. Yeah, no. And you do have just a recap, because this is it like a question I wanted to cover. You do have a lot of workbooks and assessments. um Other than the ones we've talked about, is there anything people should sort of like look for first if they're going onto your site?
00:33:15
Speaker
I love that they're going onto my site. My site needs a little work. it's so Anything you want, they can have. It's all free. you know I wish I didn't charge for the books, too. I just want to give everybody everything. and and yeah yeah um I have something called the Daily Happiness Worksheet, which is like a gratitude journal. Yes, that can be done with a kid or an adult, anybody. I love that.
00:33:41
Speaker
Every evening. So instead of reviewing behavior, we can review what you're grateful for. There's three things that you're grateful for. One thing that was awesome, like, wow, that was that cool. And something that made you smile or might have been funny.
00:33:54
Speaker
That's amazing. I actually caught myself. I had to take my son somewhere this morning and I caught myself walking in because my daughter was kind of a mess. I was like, were you good? like, what am I asking you? Like you were with your dad for two hours. There's no reason to ask that question. Did you have fun?
00:34:11
Speaker
was like, what is, what am I doing? ah We were raised to ask this question. Yeah, exactly. so ah we've all been taught. Yeah. ah So, I mean, I think what's really interesting and
Integrating Trauma Support in Education
00:34:22
Speaker
something's crystallizing for me that I haven't really thought about before. So, you know, my, um, I mentioned that we're very familiar with PDA in my household, um, because when I got, you know, frustrated with school and all of a sudden there were behaviors we'd never had before.
00:34:38
Speaker
um and it was the only thing that really explained anything to be completely transparent. It was the only, the only thing I had to kind of latch onto. but as you're talking sort about this triangle, alluding to trauma recovery,
00:34:53
Speaker
um How much of demand avoidance would you say in your prefer professional opinion is really rooted sort of like clearing some of that trauma?
00:35:06
Speaker
Oh, my gosh. Well, you know, I believe that we have to get out of the demand avoidance model. Right. Right.
00:35:17
Speaker
and And look to um what does this person need? What are they ready for? What are they not ready for? yeah And be much more individualized in our approach. Yeah.
00:35:28
Speaker
You know, and and explore rather than, you know, how they're trying to get out of something or, but explore what works best for them. Right. Because some kids maybe need to run around for 15 minutes before they get down and listen. Right. And I know it's hard to be individualized. And I i know our system isn't set up that way.
00:35:51
Speaker
But, and I know even work with adults isn't set up that way. But what do people really need? And oftentimes when we sit down and listen to them, they'll tell us. Yeah.
00:36:02
Speaker
mean And that's a big piece. Yeah, absolutely. down and listening and and really listening, really hearing where someone's at, what means, what's important to them. Right. and what their needs are at that time.
00:36:18
Speaker
Right. And what do you say? Because I know this comes up and I struggle with this too, right? Like, so we're kind of tuning into them. we need to see what, what it is that they need and what, what they want, maybe in a situation.
00:36:30
Speaker
um But what about those things that are ultimately, like important, right? So um I'm not sure, because my son doesn't have enough language to tell me. He doesn't seem to be picking up on reading like the way other kids do, right? But he also won't look at a worksheet to save his life.
00:36:48
Speaker
So how do you balance that? Like, okay, we need to deal with like the trauma, obviously, around worksheets or whatever's going on. And like, and at some point, you may need some like Orton-Gillingham. Like, do you have any insight for like balancing those things?
00:37:04
Speaker
That's a wonderful question. I didn't mean to interrupt you. Oh, no, you're fine. Go ahead. You know, sometimes we have to look at their modality for learning. And some kids may be so much better off listening to things.
00:37:18
Speaker
yeah Or I know um with adults doing therapy after there's been abuse when they've been shut down, I've used music. And music has opened people up.
00:37:29
Speaker
I've used music and movement together. yeah i mean, there's ways to get to people on a deeper level that will open them up. And then maybe they're ready to learn or ready to try something different and to move forward.
00:37:42
Speaker
But everybody's so different. And they learn in different modalities. So I think that's important, you know, finally finding the right modality for each person. Like some people are just auditory.
00:37:57
Speaker
Some people it's sensory. And if they can be touching and learning by by holding it. then And yeah, we want to always help people to develop and take the next step forward, not just give up and say, well, they don't like it.
00:38:11
Speaker
But find what works, finding what works. Right. And I will say in our um our case, I've always been a big advocate. I'm a big advocate for backing off because the more that we've like done it, the more I'm like, oh, you have a lot more skills than anybody realized.
00:38:26
Speaker
um So there's a lot of, I think there's a lot of misconceptions around trauma-informed care. ah The first of which is, ah it seems like people only really think it's necessary when trauma has been experienced, specifically with disability.
00:38:42
Speaker
um And then there's also, I've sort of stumbled into this idea without meaning to, it also seems like people sort of think that if you're having to implement trauma-informed practices, like the therapy is somehow less than, or you're not getting as much out of it.
00:38:58
Speaker
that you could, if you could just hold up a carrot and get the kid to do the thing and like move forward um or the adult in this case, what do you say to those things? That's great. um We can assume trauma.
00:39:11
Speaker
If somebody has a disability and has been bullied or marginalized or is unable to communicate, all those things are sources of trauma. So we can assume trauma.
00:39:24
Speaker
And bre I, I don't, I don't really adhere to any one assessment because I found that they don't really pertain often to folks with IDD.
00:39:34
Speaker
But when you have a disability, you probably have had bullying experiences. You probably have had a marginalization where you've been left out or you've been rejected in some way.
00:39:46
Speaker
And you have had, you know, difficulties, struggling oftentimes to communicate, right? yeah groups and And all three of those areas are are traumatizing.
00:39:57
Speaker
So that assuming trauma doesn't mean we assume post-traumatic stress disorder. Those are different things. Yeah. Right. But I think we can pretty much assume that a kid with a disability struggles.
00:40:07
Speaker
And there is some challenge and there's some trauma in that challenge when they get rejected or when they have bullying or or difficulties communicating. And there's nothing to lose by a trauma-informed support approach because it's actually what humans need. We all need to pray we all need to have connections. We all need to have a voice that's heard.
00:40:27
Speaker
right So you lose nothing by having a trauma-informed support approach.
Challenges of Ableism and Empowerment
00:40:33
Speaker
Right. And it's you only gain. And then it's it shouldn't be instead of I mean, if somebody is receiving one kind of therapy, you add that to it.
00:40:44
Speaker
but Right. Wonderful. That's wonderful. I actually do a training ah for folks who write behavior plans about writing a trauma informed behavior plan. That's amazing. Yeah. like that because it is Let's just, let's just do it all, you know, and yeah let's look at putting those trauma-informed components into all the interventions we currently have.
00:41:05
Speaker
Correct. Yeah, no, I love that. um And I think there's so much, there's so much power in that. ah One of the things we talk about a lot on the podcast, it's kind of my like shtick at the moment, my change, ah but it's really that like sort of, you know, developmentally based approach that to things when you're dealing with delays and differences.
00:41:25
Speaker
But and one of the things I often find is development gets... I'm not going to say push to the sidelines because people use it how they want to use it.
00:41:36
Speaker
But right. Like you'll send like a three-year-old into a classroom. Right. And their goal will be to get them to sit in a chair, but three-year-olds don't sit in chair. And so it's like, it's like, okay, like how much are like, how much damage are we doing? Like assuming that this should be a goal right now versus like working with the kid in front of us.
00:41:56
Speaker
who So it's always a really interesting conversation, conversation but yeah. That's amazing. um No, love hearing about your work as a whole.
00:42:07
Speaker
um So you do do a lot of training. What are some of the biggest challenges you face in shifting organizations toward more trauma-informed supports?
00:42:19
Speaker
Well, you know there's such ableism everywhere and people are so well-meaning and so good-hearted, but oftentimes, at least in the adult world, we're in phantilizing people. We're keeping them as children without realizing it.
00:42:34
Speaker
And there's always that balance between safety and risk. Yes. But we've often forgot about the importance of the dignity of risk, that it's okay for people to fail. It's okay for them to try something they can't do and then try again and try again until they can do it.
00:42:51
Speaker
you know and and we shouldn't just think we have to prevent all kinds, any in any shape and form, any kind of her Right. like We have to help people to see that they can do things to, to try something new yeah to to step out.
00:43:10
Speaker
And if we can give that support and give them the message, like, i I, think you can do it. And I expect that you're, you're going to do great trying. And if you fail, it's no big deal. Right. in Yes.
00:43:23
Speaker
And we try again and we try again and we try again, but let's not just stay in a box. Right. right love And I think it's very interesting. You know, ableism is word that people, i think, shy away from because it has this connotation, like you're good or you're bad, like you're ableist or you're not.
00:43:43
Speaker
Right. um And like so many of the isms, it's like, no, it's kind of embedded into our ways of thinking. So undoing it isn't always this clear cut, clear cut thing.
00:43:56
Speaker
Like does it, stumbling over my words, but yeah like we have to be willing to learn, um, on organization level though. So we live in the great state of New Jersey, which we talk about often on the podcast.
00:44:09
Speaker
Um, and ah you know, most of my experience has been with the education system up to this point, but ah are, do you have any advice for helping people understand ableism in a non-polarizing way when you're advocating for your kids?
00:44:26
Speaker
Oh, yeah. That might be a hard question, but and like I think we don't use the term. Right.
00:44:37
Speaker
And we just say, you know, this is how he feels. Let's put ourselves in his shoes. It's kind of that Renee Brown message of empathy.
00:44:49
Speaker
Yeah. To sit with whoever you feel is is maybe, you know, struggling with their own ableism, which all have to different degrees, right? This is just, you know, this kind of a normal human thing.
00:45:01
Speaker
And to sit with them and say, well, this is how it feels for him from what I think. Yeah. Or this how she's experiencing it. I mean, let's think for a minute what that must be like.
00:45:12
Speaker
And these kind of these empathy exercises, you know. Not saying you're an analyst, but to say, let's just stop for a minute and imagine what it's like to not be able to say what you really need.
00:45:26
Speaker
Or let's just stop for a minute and think about how much he must struggle when he's in a classroom. And you know what it's like for him? Here's how I see it. And just kind of talking in a gentle way that helps someone put themselves in their shoes. Right.
00:45:40
Speaker
Yeah, no, that that's actually really great. um And it would be I think you would be hard-pressed to get a lot of pushback about that. but it's Yeah. You bring up, and now we have to get rid of DEI, which is such baloney. Oh, gosh. This is a critical issue to be talking all the time about DEI on every level.
00:46:01
Speaker
All kinds of discriminations must be called out. um But so when we do it in that gentle way and just say, well, let's imagine what this person is going through. Right. know, people don't have their defenses up.
00:46:14
Speaker
Right. Exactly. um And again, just hard. I don't know if it's better well received when you're working with adults, when you're working with kids. I find it. It's really hard. Imagine how they must feel.
00:46:25
Speaker
Sometimes it looks like. He has
Progress in Mental Health vs. Disability Fields
00:46:28
Speaker
feelings. was like, yes. And he knows what you're talking about too. to stop pretending he does it oh And then, you know, when it comes to working with,
00:46:39
Speaker
I have two questions. um There is a lot, there are a lot of people, it seems like, at least from the, you know, silo that is the internet therapist in different modalities who are coming around and really seem to understand, like they, they need trauma informed practices or developmentally based as it may be. These kids need, need time and we don't need to be pathologizing things that aren't worth pathologizing.
00:47:03
Speaker
um Where do you see the most like movement kind of happening? Is there a specific field where it seems to be moving faster than others or is it just a great groundswell? In terms of trauma.
00:47:13
Speaker
In terms of trauma informed. yeah Yeah. I think the mental health world has really gotten it and they've gotten it for a while. The work of Bessel van der Kolk, Bruce Perry, very cool Judith Herman years ago. These people moved the world forward. They moved the mental health world forward.
00:47:29
Speaker
But sadly, in the world of disability, things don't always translate. We're always about 20, 30 years behind. So what what looked at as a trauma response for somebody with an IQ of 72 or over, and when the IQ for some reason, this test score, which I question the validity of based on norming and and all kinds statistics that don't aren't really same valid as far as I'm concerned.
00:47:54
Speaker
But when the IQ is 72 or below, then all of a sudden it's behavior. Whereas if the person's having the same issues, Oh, but you know, they're struggling. They have trauma.
00:48:06
Speaker
When we take away language or we have an intellectual disability, well, they they're having a behavior. Wait, I'm not making this up. That's actually how people think.
00:48:17
Speaker
That's what I ran into in school. Literally, it's like, he just doesn't understand. And I'm like, are you sure? like i don't I don't think that's what's going on. um Very interesting. Yeah. ah And I see a lot, I will say, just, you know, in my like sort of bubble of like therapies for kids, a lot of OTs seem to be coming around. A lot of speech therapists seem to be coming around. And then there's that like small bubble in the more behavioral world where people are like, okay, something has to sort of give.
00:48:46
Speaker
um And then leadership wise, like how important is leadership and like sort of moving these trauma informed ideas forward? ah Leadership is everything.
00:48:59
Speaker
If we can get the message from the top, it changes everything. And, you know, that's when to your question earlier about trauma informed organizations and looking at organizational change.
00:49:12
Speaker
when you have the people at the top really promoting it, understanding it, and being trauma-informed in their leadership with their people they're supervising.
00:49:23
Speaker
you know if that teacher feels supported and that aide feels supported, it's so much easier for them to be trauma-informed with the kids versus when when it's harsh on the top,
00:49:35
Speaker
you know, it going to beally asking the fish rats from the head down. Yep. I say that all the time in corporate America. Yeah. yeah But if you have leadership, that's trauma informed, then people feel safe and they feel like they can try different things and they can try and figure out how to support a kid or an adult with a disability.
00:49:55
Speaker
And they have that room and that safety to be creative and try new things and figure that person out. And yeah, or that person. Because they feel supported.
00:50:07
Speaker
Right. Exactly. Yeah. I think that's really interesting. One of the things that comes up a lot, because we have a couple more questions. I'm going to throw up two more questions. Okay. Yeah. One of the things that comes up a lot. I kind messed up, but that's all right.
00:50:21
Speaker
Oh, okay, cool. do you need to go? Do you need to go sooner? that Let's do another question. Yeah. So one of the things that's come up across a lot of podcasts is ah the idea of timeline, right? Especially with not speaking kids or kids who are struggling with demand avoidance.
00:50:36
Speaker
Look, the timeline might not look the same as it does for everyone else. But if you're creating safety around the right things, it's going to be a lot easier when they get into their 20s, when they get into their 30s, they don't have to undo What are your thoughts on that?
00:50:51
Speaker
That is perfect. Thank you for saying that because everybody develops. Yes. Yes. There is development. Yeah. And everybody, everybody develops at a different pace.
00:51:03
Speaker
Yeah. Right. Einstein didn't speak until much later than other kids. Right. Exactly. You know, everybody's developing at their own pace and we have to be patient and support them so they can just feel safe enough to move forward.
00:51:18
Speaker
Right. Yes. And not shut down. I know. I love that. um I combine that with the dignity of risk. Those two ideas I think are the coolest. ah Yeah. Well, this has been amazing. So tell, um tell everyone, um well, what's next for you? Is there anything exciting coming out? And then tell everyone where they can find you and all your info. That's so sweet.
00:51:37
Speaker
You're so sweet. It was so nice of you to say. No, no, that's the point. To give me that spotlight. You're so sweet.
Conclusion and Resources
00:51:45
Speaker
I'm training in many different places. It's a joy to me to train in this trauma-informed.
00:51:50
Speaker
I train in trauma-informed supports. I train trainers so they can train in their agencies. And I train in trauma-informed leadership so that a we can do trauma-informed supervision.
00:52:02
Speaker
i um And I'm doing that in ah in a bunch of different places. And I appreciate you saying that. And my materials are on Karen Harvey dot org. My books on Amazon and also AAIDD has published my last two books. So it's on their website.
00:52:19
Speaker
Thank you. Very cool. Well, thank you. this No, always. Cause that's kind of the point, right? I think we were talking before I hit record. All of the ideas is outside of certain fields are the same. It's just getting people the information oh and making sure your parents specifically or caregiver know there's a better way to do things.
00:52:38
Speaker
Like it can be done. It's not rocket science. So true. Yeah. Anyway. Well, thank you so much. This was amazing. I really enjoyed this. Thanks for joining us for this week's episode. If you would like to explore the resources Karen mentions, please be sure to check out the show notes.
00:52:55
Speaker
We'll have links to everything she talked about in there and check back with us next week for another episode. Thanks everyone.