Hello, my name is Dr. Sarah Vincent and I'm the moderator for this session, and I'm pleased to introduce Dr. Piri Ackerman Barger, who is Associate Dean for Health Equity, Diversity and Inclusion, and a clinical professor at the Betty Irene Moore School of Nursing at UC Davis. She is also the Director of Faculty Development for Education and Teaching and co-director of the Interprofessional Teaching Scholars Program. As Associate Dean for Health Equity, Diversity and Inclusion, Ackerman Barger leads the school's efforts to create a diverse and welcoming setting in which to learn, work, and collaborate. She also designs initiatives so the school's learning environments, workforce, programs, services, and partnerships are more diverse and inclusive. Ackerman Barger's academic interests relate to health equity and social justice. Over her career, she has combined her expertise in nursing and education to advance inclusive learning environments, education equity, and workforce diversity. She is a national consultant and speaker on strategies to help underserved and underrepresented groups and health professions thrive academically. Ackerman Barger earned a Bachelor of Science in Nursing from Humboldt State University. She earned a Master of Science in Nursing Education from California State University, and a Doctor of Philosophy in Nursing Education from the University of Northern Colorado. Her ongoing interdisciplinary work has been recognized through fellowship in the American Academy of Nurses, the 2019 UC Davis Charles P. Nash Award, the 2016 UC Davis Chancellor's Achievement Award for Diversity and Community, the 2019 Dean's Award for Excellence in Equity, Diversity, and Inclusion, four Dean's Team Awards for Inclusion Excellence, the 2017 Dean's Award for Excellence in Mentoring at Early to Mid-Career Level, the 2020 Dignity Health Dean's Leadership Award for Excellence in Diversity and Inclusion, and an award for Teaching Excellence. She has disseminated her scholarship in publications including Journal of Nursing Education, Nursing Perspectives, Journal of Best Practices and Health Professions Diversity, Academic Medicine, and Journal of the National Black Nurses Association. Thank you so much, Dr. Benson. It's my pleasure to be here today. Thank you so much for lending your time and your expertise. Hi, it's wonderful to be here with you today. I'm going to talk about addressing microaggressions using the triangle model. So let's start with the definition of microaggressions. Microaggressions are subtle statements and behaviors that consciously or unconsciously communicate denigrating messages to individuals or groups based on some aspect of their identity. Daryl Dwing Suh is one of the most prolific scholars in this area, and one of the things that he has done is he has created subcategories for microaggressions. And not that you need to memorize these, but these give you a sense of the different ways that microaggressions can manifest. For example, microassaults are generally what people think of when they think of a microaggression. These are those intentional and explicitly derogatory verbal or nonverbal attacks. Microinsults tend to be a little bit more subtle. They are rude and insensitive subtle putdowns of someone's heritage or identity. And then microinvalidations are remarks that diminish, dismiss, or negate the realities and histories of groups of people. Someone might say, I've never seen a racist interaction, so I'm not convinced that it even exists, right? That would be an invalidation. Some examples of healthcare microaggressions. This is from data that I've collected over time. Said to a Latino nursing student, you are a credit to your race. This was said when he was doing a really good job on a clinical floor. Said to a Black medical student, you were admitted because you were Black. It is really hard for white men to get admitted these days. Said to a Native American student, why don't you tell your classmates about the health issues of Native Americans? Said to a male nurse, I didn't know that men could be so caring. And said to a student with they, them pronouns, young people these days can't even decide if they are a boy or a girl. So let's talk about the impact of microaggressions, the health impact specifically. We know from the literature and it seems like it could be fairly apparent that the experience of microaggressions, especially if there's a cumulative amount of them, it can be related to depression and anxiety. And of course we know that depression and anxiety can lead to a suicide ideation or actual suicide attempt. So we consider this a serious mental health problem. It also creates physical health problems, basically in the form of allostatic load. Allostatic load is basically the wear and tear of the body over time in relationship to stress. Stress is a hugely resource-intensive process that takes its toll. And some of the things that we see at the level of the cardiovascular system is hypertension, cardiovascular disease. At the level of the pancreas and the liver, we see diabetes. And then at the level of the immune system, the GI system and the reproductive system, those systems take a back seat when there's chronic stress. And so when we're wondering why are there certain groups of people that seem to be more prone to certain conditions, it's not really based on race. It's based on the experience of racism or microaggressions or some aspect of marginalization. And then there's that piece about lack of trust in the health care system. If individuals or families or communities are experiencing microaggressions from health care providers, they're going to be less interested in coming and being part of the health care system and coming and seeing us and getting diagnosed or looking at prevention. They're more likely to wait until later in their illness before they're willing to come and see us. And of course, there's health outcomes because of that. There are social and cognitive impacts of microaggressions. When they go unchallenged chronically, they perpetuate stereotypes and passively allow society to devalue groups. And this can come out in clinical decision making or prioritization of patient care. It also can cause energy to be diverted away from learning if we're working with students or productivity in the clinical setting. So given that this is a problem that has serious consequences, I'd like to go over a model for potentially addressing microaggressions. So the goals of the triangle model, one is it's a humanistic approach. And what I mean by that is that we understand that human beings are complicated, right? You can have somebody who is very much living up to their values in one moment and then is acting horribly in the next moment. You probably think about times when you've done that yourself, for example, maybe on your way to work in the morning, we've got coffee and you have a positive outlook in the world. Somebody cuts in front of you, you're fine. On the way home, when you're grumpy and tired, you're the one cutting in front of other people and cussing, right? So you are still that same person, but there's different manifestations. So this is true with every interaction. So we've got to understand that we are complicated. The next thing is that the model is a way to promote inclusion excellence. That's the goal of the model. And in part of that, you need to decide in any moment, whether an interaction is a teachable moment or an opportunity to promote inclusion and inherent in that is potentially the decision not to do that. Maybe this isn't a teachable moment, but I'm hoping that with this model, folks will just pause for a moment and think about, is there something that I can do with this? It is also about preventing microaggressions, understanding that we can't control other people's behavior, but we can control our own. And so we want to minimize the times when we're the source of a microaggression. And you may think, well, I'm not, I'm never the source. That's not part of my value system. I can guarantee you that you have been the source of the microaggression and you will again. And so how are you going to address that when you realize that you've been the source? Using a restorative justice concept, this is about potentially repairing and reestablishing relationships within an academic community. And also about restoring reputations. And what I mean by that is that when we're navigating something called cancel culture, you know, basically what cancel culture does is it freezes you in time such that you are now defined for the rest of your life based on this interaction. There's time and a place, I mean, cancel culture is a tool that can be used and it's like the big guns, but sometimes people mess up and they can learn and grow and hopefully they won't be held in that space forever. I know that there's times that I've been the source of a microaggression and I've been very grateful to those people that have had faith in me, told me about it and let me continue to grow without that being the defining moment for me. What the model is not is an algorithm or a roadmap. People always say, well, if I say this and they say that, then what do I say? And it's not that easy. Again, people are complicated. So I can't give you an algorithm or a roadmap, but what I'm offering is a framework for making decisions about how to handle a microaggression, depending on what role you are in that microaggression. It is not appropriate for every situation, especially if there's a safety issue, if there's overt racism or discrimination, if your status is in some way jeopardized, this happens a lot for students, like sometimes it is not safe to address that microaggression from your professor who holds your future in their hands. And there has to be another way for you to be able to address that microaggression. So this might not be what you want to do. And this should not be about taking sides. Remember that that's a binary and we need to avoid binaries. People are not good or bad, they're complicated. People are not racist or not racist, they're complicated. And then in a situation, people are not right or wrong, they're having their authentic experiences in a moment. And if you can figure out what their vantage point is, how they're experiencing this moment, it may give you some insight about whether it's a teachable moment, and if so, how you might be able to intervene. So this is the triangle model. Most people can come up with examples of when they're the recipient of a microaggression. I think it's important to share these experiences so that we can learn about the different ways that this manifests for individuals. Sometimes it's harder to think of a time that you've been the source of a microaggression. There are a couple of reasons for that. One is that if you have a value system that you treat people well, and that you're trying to be a good person in the world, you may go through a process of abscessing that memory or that experience so that you can just get rid of it and not feel the pain of that cognitive dissonance. The other thing is that you may start to rationalize. We're really good at rationalizing our actions such that you can even get to the point where you begin to feel like you were the victim because you were falsely accused. That has its own sort of problem in terms of perpetuating whatever interaction has happened, so we really need to be mindful of that and interrupt that. And then the bystander is a really important role. The unfortunate thing is a lot of times when people are bystanders, they think, I don't want to be involved with this uncomfortable situation, and they leave and think that they're being neutral for not having gotten involved, but that's not neutral. That can feel very painful to the recipient who's now left being traumatized and having no one there to validate or stand up for or even witness what is about to occur. So the bystander role is actually really important. So I am going to use an example scenario. This is again from my data. There was an interaction where classmates were asking after an exam, okay, what did you get on the exam? And people responded, I got an A, a B, or I have to retake it, things like that. And I didn't even want to mention it, but I was specifically asked what I'd gotten, so I said, I got 100% on the exam. And people didn't believe it for some reason. Even though other people had a similar grade, everyone was kind of surprised that I got such a high score and didn't have to retake it. I can't help but wonder if that's because I am Black. So let's go through some potential responses from the perspective of the recipient, the source, and the bystander. So we're going to start with the action approach, which is asking clarifying questions. Coming from curiosity, not judgment, this is a moment when you might say, why would a good and decent person act this way? And this doesn't mean that you're letting anybody off the hook. It means that you're trying to get a sense of what are they coming, where are they coming from with this? You might tell what you observed in a factual manner. You might do impact exploration or own your own thoughts and feelings. And depending on your assessment through all of this, determining next steps. So let's go to the next slide, and we'll put this into action with things that Rick might say. So if he asks a clarifying question, he might say, you seem surprised that I received such a high grade. Does that surprise you? If he's going to come from curiosity, not judgment, he might say, I want to better understand your surprise. Can you explain it to me? You might tell what you observed in a factual manner. For example, I noticed that when you asked some of the other students about their grade, you did not express the same level of surprise. Impact exploration, discuss the impact of the statement. For example, ouch, your surprise makes me feel like people doubt my ability and my intellect. And then you might go further with owning your thoughts and feelings. And in this case, you might say, it's difficult being the only black student in our cohort. People often think I'm here only to fulfill a diversity goal. That's hard because I've always done well in school. And so as the recipient, you're assessing to see, is the individual, are they listening? Are they willing to engage? If they're becoming defensive and angry, you might say, okay, back off. If they are looking curious or like, oh my gosh, I need to know more about that. That might be like, okay, we've got to go to class now, but let's get some coffee later and talk about this. So if you realize that you're the source, and again, it's not about if. It's about when. So just in a general way, you need to acknowledge that you have bias. Sometimes those biases are not at all in alignment with your value system or who you want to be. And that just happens as we are taking in social messages, pretty much every moment of our lives. And so sometimes those things actually come out of our mouths or in our actions. So acknowledging that that can happen for you. Getting feedback and information from folks. Like if you notice that you made a joke and you think that it's funny and nobody's laughing, that might be a moment for you to be like, whoa, okay, something happened here. I need to explore that a little bit more. Saying you're sorry in an authentic way. Saying something like, I'm sorry you're offended. That's not an apology. That's actually blaming somebody. When you think about an apology as really being in this moment as a time to listen, whether it was your intention or not, this is an opportunity for you to learn about somebody else's experience. So you want to focus on the impact rather than the intent. Like it's okay to say it wasn't my intention, but focus on, name the thing that has happened, and then you can give an authentic apology. And if somebody tells you what happens and how it impacted them, that's a gift. They're trusting you to be able to learn and grow from that. So you want to say thank you. So for the person in this scenario who realizes that he or she has said something, again, acknowledging that bias can be there or it can be interpreted as bias. Seeking feedback. The person might say, I noticed when we were talking about the exam grades, you became quiet. How was that interaction for you? Again, with the authentic apologies, they can be difficult because we often think of them as an admission of wrongdoing. An apology should be about recognizing someone else's pain. Focusing on the impact rather than the intent. So you might say, although it was not my intention to harm you, I see how my questioning your score affected you, and I'm sorry. And then the thank you. Thank you for the feedback. I appreciate you taking the time to help me grow as a person. So finally, let's talk about the bystander arise approach. So this is an awareness of microaggressions and the many different ways that people might experience microaggressions. So we may have students or other people that experience something as a microaggression that we wouldn't experience as a microaggression. It doesn't mean it's not a microaggression, right? It's how the individual is experiencing that. And if you take time to learn and grow, you'll see certain things impact certain groups of people in different ways. And you want to have an overall awareness so that you can potentially intervene when that happens. Respond with empathy and without judgment. And that is for both the recipient and the source. For the recipient, we never want to tell people to grow a thicker skin. You have no idea what's happening with people's skin if we're going to use the metaphor. Could be open wounding. Could be scar tissue. You just can't judge other people's skin. So we never want to say that. Often what a recipient needs is validation and to be believed that this is their experience. Responding with empathy and no judgment for the source doesn't mean that they're let off the hook. But again, you're trying to figure out where they're coming from so that you can figure out is there a way for this to be a teachable moment. Inquiry of facts. Statements that start with I and then educate and engage. And on the next slide, we'll go over examples of that. So for a bystander seeing this interaction with Rick and classmates, you might say something like you're surprised about Rick's score may suggest a biased assumption. You want to, again, respond with empathy. It might be tempting to respond with negative emotions that have been engendered by the interaction. But approaching with empathy is critical because the goal is to rebuild community. Avoid judgment means allowing others the grace to make mistakes and learn from their mistakes. So you might say to the source, inquiry, can you explain your comment to me or what did you mean by that? You also might use I statements. So I noticed that Rick seemed offended when you made that comment about his score. And honestly, I'm wondering what you meant too. Educating and engaging. You might say, I know you didn't intend to stereotype anyone, but as your friend, I want you to know that what you said can be interpreted that way. So I'm going to stop the presentation here. One thing that I want to say is that, again, this is not an algorithm. You have to figure out which of these in any given moment is the right fit for you. Sometimes there are people that are able to use humor, right, to navigate a situation like this in any of those roles. If that's not an approach you use, this is definitely not the time for your comedic debut. Be authentic, right? Be present in the moment. And just stop and think for a little bit about what is the best way, what is the best time? Is it right now? Because you can't address a microaggression the next day or later. It doesn't have to be in the moment. I actually had somebody come back to me after a year and said, I think that I might have microaggressed you and apologized to me. And I was like, wow, that actually after a year was still very meaningful, right? So just stopping and thinking about is it the time and the place and what is the right fit for me? Thank you so much for joining me. It is my pleasure to introduce doctoral candidate Stephanie Keeney-Parks, who I had the pleasure of serving on a panel with and knew that she was someone that our APA membership and those who attend our conference, the mental health professionals who are part of this meeting really needed to hear from. So I'm so pleased that she could join us. Stephanie is a doctoral student at the University of California, Los Angeles in the Department of Anthropology, where she studies medical, psychological and linguistic anthropology. She also possesses a master's degree in medical anthropology from Creighton University in Omaha, Nebraska. Stephanie's research centers on the everyday lives of black parents who have children with autism. She is also interested in the process of diagnosing a black child with autism, as well as the health care disparities that these families face. Stephanie is interested in centering the black parents narrative and experience as the expert to decenter white ideologies on health, health care, disability and black culture. Her research stems from her experiences as a black woman, wife and mother of two children. Stephanie's oldest child is diagnosed with autism. So first, I'd like to thank you for inviting me into your space today. I'm really excited to talk to you about my work with black families that have children with autism. It's important to acknowledge my own positionality and how I come to this work. I'm the mother of two children and my oldest child has autism. My son, Dal, was diagnosed in 2009 around his fourth birthday. Dal spent seven years in various therapeutic settings such as ABA, speech, OT, etc. But throughout the process of diagnosis and long-term therapy, it felt like I was consistently a bridge between two different worlds. The world of learning the biomedical terms, the language of autism, expectations of clinicians, educators, disability within white spaces. In the world of our family, I was explaining why Dell was doing so much therapy and what types of therapy and their benefits. Our extended family was unfamiliar with the demands of Dell's label. However, Dell's label was not necessary for our family to recognize his needs, to provide support, love, and include him as a valued member. My experience as a black mother and now graduate student has taught me that too often when we're contemplating the reasons why black folks do not attend to biomedical standards, we center anti-black assumptions about lack of education or other perceived deficiencies. But throughout Dell's life, post-diagnosis, I found that of all the support systems I have access to, black families with autistic children are consistently the most knowledgeable about things like special education, access to therapeutic services, and parenting strategies that support our specific cultural needs. Now I spent several years working on the following questions, such as what does it mean to raise a child with autism? And what does that look like in the everyday practice of black families? And by everyday, I mean the small mundane moments in which in settings such as the home, places like dinner, and unstructured family time. And in community places like swimming lessons and church, as well as those specific disability moments in the clinic or at IEPs, etc. And how do we navigate the white hegemonic norms of disability and autism in particular? How do we experience disability in intercultural settings? Anthropologists such as myself, we have a specific definition of qualitative research that varies significantly from our social science peers. And ethnography is done via participant observation. So for us, that means living and being with people in spaces that are not structured by the researcher. We do this over long periods of time. And it's also true that I do spend some time doing structured interviews, but they're not explicitly controlled by me. Meaning that if a participant kind of goes off on their own path with the interview, I generally let that go. So usually I think about the work that I do by using things like transcribing, coding, looking for themes, discourse analysis, racial linguistics and language ideologies to think about and tease about, tease out the ways that families talk about and understand the intersection of race, disability class and other social identities. And I pay close attention to interlocutors use of narrative storytelling as a means of understanding their autobiographical truths. Now in the contemporary United States, Black students in particular are at higher risk of becoming over-identified for special education, but also at significant risk for misdiagnosis in both the medical and educational systems. When we're not careful, racism is used to frame the non-normative. It can invoke a label. But on the flip side, it can also be instrumental in depriving a child of a label. Black disabled students in special education constitute the largest proportion of students suspended annually. Up to 85% of youth in juvenile detention facilities have disabilities that make them eligible for special education services. Yet due to miss and under-diagnosis, only 37% of these children receive specialized education services while in school. Further still, data on the outcomes of Black disabled students in special education suggests that three out of four of these young people will experience incarceration and or chronic unemployment post high school. And I must also make clear that Black disabled people are the group that suffer the most instances of police brutality. These statistics layer onto the already terrible possibilities that families face in clinical settings. A Black child is significantly more likely to experience a misdiagnosis, under-diagnosis, late diagnosis. And they're significantly more likely to suffer a lack of access to quality and quantity of services and supports. So what do Black families do when faced with the nexus of disparities across the social landscape? The parents in the narratives which I'll share with you today are from 2016 and 2017. And the families that I work with came to the study via snowball method. I started recruiting families that I had been in contact with during my own family's military life. I also reached out to Black clinicians who introduced me to more families. In turn, parents would often say something like, oh, my sorority sister has a kid with autism. Let me connect you to her. And this particular makeup of this sample is of middle-class college-educated Black folks. And it's due in part to the sampling technique. But for me, the makeup of this group of families reinforces the systems of care that exist along class lines within our community, such as the military, a system that many Black people find financial stability, health care, and material support to gain access to higher education. And there is also what we refer to as the Divine Nine, a network of nine historically Black sororities and fraternities. Over half of the parents in this sample identify as a member of a Black fraternity or sorority. As the Divine Nine are connected to universities, many of the military members represented in the sample are also members of these historically Black organizations. And working with middle-class college-educated group of families has allowed me to destabilize the research that too often frames the Black experiences analogous to poverty and the result of lack of education. So I'm going to introduce you to Hattie. Hattie is married to Hal, her college sweetheart, and they're the parents of a young man, age 10, who's diagnosed as having autism. And our conversations have taken place over many years and across locations such as our children's swimming lessons, non-play dates, and the comfort of our kitchens and homes, and eventually over FaceTime as we've both moved across the country several times. Both Hattie and Hal come from deep Southern roots where they keep strong ties to Kenan culture. Hattie has a graduate degree and works in biomedicine as a registered dietitian. And her spouse is working at the highest levels of the US military. He possesses two graduate degrees. And they humbly identify themselves as middle-class. Hattie in particular has been able to assimilate herself into the biomedical sphere in her work as a registered dietitian, as well as in her medical care choices for treating her son's autism. Hattie is a master at bringing together the two worlds of Black culture and biomedicine. As she navigates biomedical services such as ABA, OTPT, speech, and special education. She is polite but firm in the centering her therapy as skill building in support of her child's Black cultural ways of being. She frames her worldview as raising her son in the experience of having grown up with Ken that she identifies as always been different. So I'm going to bring you into Hattie's kitchen on this particular day. We had just returned from our children's swimming lessons. We were in Hattie's home and we're making lunch. The boys were unusually tired and occupied with an episode of Hanny Manny, their favorite at the time. My little girl Bella was snuggled up onto the couch and asleep. Hattie is an exceptional storyteller, which I'll share with you today. As we're pulling together lunch, she tells me about her cousin Tom. Hattie says, Tom would come to the store, her daddy's fish market every Saturday. He would have his money and there was a store down the street. He would do some shopping, do his thing, come back, eat lunch, and then say, all right, uncle, Hattie's dad, I'm going to go back down the street. We made sure he understood his money. He wasn't the best, but he could do it. My daddy would say, now how much money you got, 20? If you go down that street, you better come back with $10. Tom had a girlfriend and my daddy would coach him. Now go walk with your girlfriend, but don't spend all your money on her. These are things my daddy would teach any young man. He was really independent. When I asked Hattie, did you know growing up that Tom was different or did you learn that as an adult? Hattie says, well, we just grew up with him, so we knew he was different. Tom didn't have a label or anything. We just knew he was slow. And my mama would make sure he was, his mama would make sure he was independent and say things like, Tom, I'm going to drop you and then pick you up at five. And if my daddy was going to take him home, Tom would say, Uncle, what time are you going to close up the market? My daddy would give him a timeline and tell him, you need to be back to help. Even today, Tom is stuck to this routine and he's around 53. So I asked Hattie, I know that you've said that Tom has had some type of intellectual disability, but do you think if he were a child today, he would be labeled with autism? And Hattie says, yes, in hindsight, Tom seems to have some autism. His routine, Tom is always about his routine and you can't upset that. He'll fuss about it for the rest of the week. You know, when my daddy got sick, they had to bring Tom to the house to see my daddy because he wasn't at the market and that broke his routine. Even when Tom's parents passed, his brother had to learn that it was important to bring Tom to the market every Saturday. Somebody in the family always took him to the fish market. Now Tom had a cell phone and he called to find out what was going down. You know, call an uncle, you're going to have the fish market open. He was very independent in that aspect that I would call life. And I learned that from her. Hattie's aunt, Tom's mother. Hattie goes on. She always had Tom dressed to the nines. She always felt like Tom needed to make the best impression because I don't want people to treat him. So she always made sure Tom's clean. Tom understood to press your shirt and press your pants, you wear a belt and you don't walk around sagging that just don't go down in our family. Even with the haircut, you keep your hair clean. We've instilled that in our son too. Tom went to the fair like all the other kids, Bible school, line for school, everybody get in line. So there is no difference. But we might have to show him instead of just tell him because in, but because he rolled with everyone, just like you're going to get in that car, you're going to go to. You go to the store and the kids got money for lollipops. He did too. He was sent off like all the other kids. So my son came, my daddy said, you make sure he knows how to read and how to count the money and he'll be just fine. The mentality is you just keep pushing because that's how we do. You just keep pushing and it will happen. So I asked Katty, is this how you raised your son? And she says, yes, because this little boy can and I want him to be independent. Now I want to situate this narrative and history of it. Tom was born in the early 60s and this family is located in South Carolina. Hattie's memory of Tom and her family is at a point in time when autism, when an autism diagnosis wasn't common in general and certainly not common for black folk. Yet her family structure was such that in recognition of Tom's differences, they were able to provide the education and care he needed. Now as Hattie describes it, that aspect that I call life. Her daddy and her aunt made sure Tom learned how to navigate the world around him by including him into the family structure, the fish market, church, et cetera. Now Hattie tells us about Tom being included like everyone else and through his inclusion with all of the children without question, not without supports. As she states, sometimes you have to show him and tell him. A recognition of difference that is not a stigma but support making the inclusion of Tom possible. Now as Tom's parents and elders pass on, you hear Hattie talk about her family stepping in and this loving supportive inclusion of Tom within the family history directly informs Hattie's care of her own child. An equity in family support and love of Tom with or without biomedical category highlights how black families work from a place of humanization, strength and resilience. My analysis is not to say that we do not need support and to create equity and systems for black families. We absolutely do. But I argue that spending time thinking about the everyday life and narratives of families is important. Without this analysis, we would miss the beautiful ways that black families are loving their children. How in the face of 1960s American white supremacy in the deep South, a black family was still practicing hope that did not negate Tom's needs but rather did the work of supporting his future in spite of systemic racism that the family faced. I'm gonna introduce you to Dr. Smith. Now Dr. Smith identifies as a black upper middle class married mother of three. She's also tenure faculty at a well-respected university in the United States where her scholarly work in behavioral psychology focuses on intervention for children with autism. She was originally a part of my project as a subject matter expert, but it all changed when she disclosed that she intentionally had her child diagnosed with ADHD, but in her clinical opinion, her child has autism. Now, when my conversations with Dr. Smith regarding her son, Isaac began, Isaac was struggling with life in elementary school. And according to his mother, Isaac's grades hovered around the mid to low range and his sensory processing was making everyday tasks like eating and hair brushing a fight at best and nearly impossible at worst. Isaac was having a hard time connecting to his classmates and often felt like he did not fit in with other students or did not have any friends. And Isaac also showed signs of difficulty in his executive planning. His mother tells me, when it comes to our son, you know, we know he's different and that there's something clearly delayed, but we, well, we just said, we'll handle things as they come to us. And you know, the school, well, the school sees him as a kid that can't or won't focus. And I don't really know how intentional all of our responses really were, but we did intentionally get him diagnosed with ADHD first with the school. We needed it for state testing. And then I went to the pediatrician. You know, I know how it all works and I know what to say. And I thought, well, what is the diagnosis that we can live with? That's a very normal one to have. Let's go with that one. I know how people behave and how they reinforce behaviors. This is part of the problem with labels, the bar drops. They would lower their expectations of my child. And I've seen studies that show how detrimental that can be for students when they have teachers that see them as less intelligent. So she goes on by telling me he has a 504 and we're giving him health trouble now. We're in a school that's 98% white and that's why we're trying to keep these teachers in check. Look, this is my take and this is just how I feel comfortable. But school is a social institution and you go there and you socialize and all of your schoolwork. Well, I will do this with you at home. I will tell you, I will teach you what you need to know at home because the school fucking can't. And yep, you just go to school and you have a good time and you come home and work. And if I thought special education would serve him then I would say yes, give him that autism diagnosis. But I promise you, I will homeschool him. The data on special education is so bad. I can't go the special ed route, not until I have to and I still don't have to. I mean, we are trying to maintain him in the classroom but I keep asking myself what happens when he starts getting letter grades? What happens when he's coming home with C's? And I know that if I weren't working with him at home using applied behavioral analysis able to support him he'd have F's, that's just what it is. And I'm afraid we won't be able to maintain it. So that is what exactly what we are trying to maintain. So all of his teachers are just convinced that he has ADHD and that this is a focus or behavior problem and that he's really smart. And I'm like, okay, that sounds great. I'm just trying to give him the closest thing to a normal successful life that I can. And the last parent you will meet is Belle. And in this slide, I've included a picture of Elijah McClain, a young man who was diagnosed with autism in the early years of his life. Elijah McClain, a young black man that was murdered by police. And as he was being murdered, his last words were, I'm different. He begged for his life by telling the police that he was disabled and had autism. And every family that I've worked with has spoken about police brutality. We are not unjustified in our fears of raising a black disabled child with the specter of police brutality as a very real possibility. And this is so for many of our families, a worst nightmare. Are you going to focus any of the research on fears and safety? We're worried about his safety. It's like his blackness is another disability. I practice with my son all the time, a six-year-old little boy. I have him throw his hands in the air just so that he might know what to do if the police stop him. So many of us are doing everything we can, including having an autistic kindergartner throw his hands up, practicing how to keep himself safe from police. Or as we saw with Dr. Smith, the use of a misdiagnosis as protection for her son's future wellbeing. Or Hattie's family who's shown us the ways that disability can be cared for as difference that is included and supported with or without the label. All of these mothers have shown us the varying ways in which families can orientate to the racialized and structural violence that their children face. So because my method is ethnography and my interest in disability lies within the black family, my work moves across locations from education to the clinic to the home. And some of my work includes time spent in clinical settings, observing how clinicians work with, think about and train their students to work with black families. In clinical spaces, I found that there are several glaring issues or at least they're glaring to me. Students, as in the graduate students, your soon to be medical students or medical doctors are being taught that the body and science exists without culture. So for example, I watched a clinician or a faculty member teach a group of 50 plus graduate students that during an autism diagnosis, it's not about culture, but rather about response, erasing the fact that responses are indeed culturally shaped. Thus, the meaning of a response can vary significantly. What is normative to black Americans does not appear as normative to white Americans. Second, typical black cultural norms, such as conversational sampling, what you might know to be the dropping of popular culture into everyday conversations, such as the use of a rap lyric. Another example would be a clinician asked my son what he likes. And my son replied by saying, I like big butts and I cannot lie, which is a lyric from Sir Mix-a-Lot. But to this, but this use of a lyric looked to the clinician like it was atypical. It was not typical to white understanding of how language should work, right? Because blackness is atypical to white behavior norms. Now the idea, and the third thing that I often see in clinics is the ideology that blackness is deviant and this runs the gamut, right? I watched this happen with a child using the rap lyric, right, my own son. And then I watched the clinician as he scored the test, feeling that Dell's use of this lyric was inappropriate, disruptive, and finally termed as echolalic. But if you came to my house on a Sunday evening and you watched anybody participate in Sunday evening dinner, the use of rap lyrics or the use of popular culture within conversation is a very typical way for black people to index being funny or kind of like add some flavor to the way that we speak about the world. But black parents are also deemed deviant in clinical settings. In one particular instance, a black mother stated that she had whooped her child. The clinician proceeded to tell the parent that she was unfit and threatened to call CPS, stating that she believed the mother was beating her son. A white mother in the very next room in the very next appointment was in the same situation where her child told the clinician that the mother spanked him. And this parent was a termed emotionally unavailable and in need of support such as respite care. But this racism in the clinic doesn't stop here. Black clinicians and students and graduate students in these clinical settings also suffer medical racism. In one instance, a black grad student code switched to speak with the young black team and his white supervisor overseeing the interaction responded by telling her student that it was inappropriate and if she heard him use that language again, he would lose his internship. Now for black people in medical spaces, there's no form of educational degree, class or identity that can safeguard us from the racism that permeates these spaces. So what I hope you take away from your time with me today is that black families do face terrifying possibilities for our disabled children. And we fight inequity in every system we encounter. However, my research shows that black families have historically via the lessons of our elders and ancestors are currently creating strategies to safeguard and support our kids. And even when you may not understand why a mother would intentionally misdiagnose her child, she is doing it in protection of her child. But to be able to see these strengths, I argue that alongside large quantitative studies, there's great value in paying close attention to the folks everyday lives and the mundane moments of families and the various spaces that they inhabit such as the clinic. And it's also important to tie the everyday moments to the larger social scapes of the United States and the very real anti-black racism that exists. Think about the tension with schools and blackness. Are they really safe spaces for black students given the data on racism from teachers and administrators? Racism that includes significantly higher rates of suspension, disciplinary actions, and such as restraints and seclusion for black disabled students. I want you to sit with the knowledge that for black disabled special education, especially in the segregated classrooms, the life outcomes include chronic unemployment, mass incarceration. So why would we expect black parents to live with this, to accept this as an outcome for their children? Medical racism and health inequalities in real time is damning to the discipline of biomedicine. Racism is being taught to new and upcoming clinicians. It is perpetuated and it is recycled on black bodies of all types. Children's, patients, families, parents, students, clinicians, anyone that is black in those spaces. And I'm saying that we have to be careful, really careful. We have to both keep in view the strength of these families and how they navigate what is a very real racial nightmare that they face and that we face collectively as we endeavor to raise our children against all odds. So I want to thank you for your time and I'm happy to answer any questions that you may have. I'm pleased to introduce Miss Polly McKinney, who is a valued collaborator here in my home state of Georgia and also glad to say a friend. Polly is a firm believer that every voice is important, and she finds a way to ensure that lived experiences of Georgia's children and youth are heard by those making decisions that impact them. Polly leads Georgia Voices for Children's advocacy efforts. She joined the organization in 2010 and has been integral in moving the needle for all areas of child well-being in our state. Prior to joining Voices, Polly was responsible for developing communications for Southern States Energy Board, served as executive director of the League of Women Voters in Georgia, and spent more than two decades in various production capacities in the Georgia film industry. Hi, I'm Polly. As you can see, I work at Voices for Georgia's Children. I'm not sure if you can see it on this slide in particular, but I am the advocacy director of Voices, and we are what we call a whole child policy shop. When we look at policies, we look across many systems to see how they all interact and how each one affects a child or children collectively and independently, and so we work on policy and advocacy to make things work better. When I was asked to present, I am presenting from both my professional place as a person who lobbies and works on behalf of systems change, as well as a mom who has had to 1013 her son, and what I learned in that process of having him in a crisis, for a week, and the things that, even with all I know about the work I do, were even more glaring to experience them with my own family and with my own child. So my presentation is sort of a mush up of all of those things, of my lived experience, as well as my work experience to see if I can make the world the way I want it to be, what I would recommend. And so that is my first, and I'm going to see if I can figure out how to advance my, oh, there we go. So I came up with a few buckets of things, and let me just start here and give you a little background. So we struggled, or I struggled with my son's mental health, and I would say behavioral health, for, oh, probably three years, and ended up 1013ing him when he was 16, after many attempts at many other things. And that is using all the resources I have as a professional. I mean, I am incredibly lucky in what I do. I get to know all kinds of people I know, judges and providers and lawyers and lawmakers and all kinds of folks, and work on behalf of the hardest parts of the system. I know this morning we've talked a lot about systemic and historical racism, which is a humongous thing. We have spoken about youth with disabilities, we've spoken about all kinds of things. And I work on all of those things for change, and I've worked on this for many, you know, over a decade. And even with all of that in my tool belt, I couldn't solve some problems early on. There was not a pathway that we could find with the advice of all of my friends and co-workers and colleagues that we could find and ultimately ended up 1013ing my son, which was the beginning of another journey for us as a family. So I just want to be clear about that. And now, like, things are stable, you know, knock on wood a few years later and things are going well and I've learned a lot looking back and talking to him and thinking deeply about this experience and as I hear a few buckets of things that I think are helpful for providers and folks to know about the work and the experience. First of all, I would say, you know, there is the blame game. So, the problem there is that we tend to blame parents when things don't work with kids until the kids really get in trouble and come in contact with the system whatever that system is, and then we blame the kids. And then what happens, what we see is a lot of times we try to fix the kid, right? We try to fix the kid. We don't, we sometimes are family centered and try to work with family and sometimes we're not. Rarely do we try to put any sort of blame on the system or figure out what's wrong with the system. And so, the dilemma is who we're blaming and, you know, rather than what we should fix. And so it's like always defining the problem is a big thing. So I would say, you know, what I'd like, what I would recommend is take a holistic look at changing, not just the behavior of the child and the family but also the drivers of those behaviors at the same time and oftentimes those drivers are our schools. They are racism, they are ill informed opinions about what makes children tick. And what you should do in those. So by the time a kid gets to a crisis point, all of these other things like not worked. And we end up blaming the individual, as opposed to trying to help individual and then by the time it's very late in the, in the game for that, that child or youth. It's really, really hard and miserable for everybody involved. So I'd say, take a holistic look at the behavior and the drivers and try and think strategically around those things. Make the overall strategic framework of helping a youth. Not that you shouldn't have the youth there and being listening and all those things but make make this strategy, family and system centric think about what is what in other systems, not even just your own system but the systems that preceded this child coming in contact with yours, and the systems that follow this child after they leave your system. How can you build a strategy that works for that trajectory. And work in your own system and even with schools or reentry services or whatever to make sure that it communicates that this, this child and family deserve and are worthy of happiness, and that they can they can make it they're capable of doing the work to get there. We came in contact with the mental health system. That was not the message we received the message was there's something wrong we're going to fix it and this is what you have to do to fix it. And I think that is a common message, unfortunately, and it's very. We'll get to the other part of this but I think that the feeling worthy and hopeful is, is something that people have to find within themselves but something that can be can be given it can be shared and reinforced at every single step of the way. So that that's where I am with them, look at my notes here without covering up my sound. We'll get to the next side, empathy. So far, everybody has mentioned empathy empathy is key, I can't overstate how important it is to empathize and to have that be one of your, like first wake up in the morning functions as a provider, or somebody who works with children. So, what I have heard many times I do a lot of interviews I'm also a filmmaker and I interview a lot of youth and children and nobody understands right, nobody understands. I asked my own kids that and they're like you just don't understand the doctors doesn't understand. You know, I don't feel like telling them, because they just don't understand and they're not going to understand. And so, so that's a dilemma it's a dilemma, probably in humanity. So one of the things I think is really important and where we always found more success was trying to put ourselves in the youth or child shoes. I've had a lot of folks who were do my work in my sort of advocacy space in the world advocacy space who have done the food stamp challenge where you go and you live on food stamps for a week, like, and you have to you have to learn you have to think differently about food and you have to think differently about money and you have to think differently about access and all of those important things. And sometimes it's that, like creating a lived experience do that. But when you're talking about children in this in systems, you have to really think hard, like, like, like, what are they up against, and I don't feel like that is a very common thought in many systems. So I just wanted to emphasize to really changing your frame about what you're doing is to vote with the kid is seeing. And also think about. Think about the prescriptive things that you offer that child and family. Sometimes it's not what you give them it's what they hear that you're giving them what they think that you're giving them I know one of the things that was frustrating to us was the Prozac thing so the first thing they did was put my son on Prozac. And then they wanted to, which I think was to stabilize I mean I'm not a clinician, but in the end he felt like he was, you know, he didn't keep we didn't keep the prescription. He did it for a week and he was like I hate this I hate feeling like this. And I called me like no he really needs to stand and I'm like well you know what, let's think harder like what is the other solution what are there's got to be another solution. But I didn't have that option like nobody asked me. Nobody offered anything and didn't matter. The other thing is, who, who's the messenger. I mean, the, you know, my son saw a psychiatrist. He saw two different for two different 15 minute intervals, and liked him, but couldn't access that provider could NASA the one person he really trusted in the group to, to help. So who is the messenger. How long is that messenger engaging with the child is that Mr trustworthy to the people at the messenger whether it's a provider or the nurse or whatever. Is that the right messenger. And then what are people hearing that person say so it's not what you say, I swear it's not what people say to two kids it's what kids here. It's not what they say to families it's what families here and if you're not, they're not hearing what you need them. What you're saying to them then it's not on them it's kind of on you to get to figure that out and to say something so they can hear you in a productive way. And then this is something I say a lot. That was not self evident in this crisis treatment facility was not a PR TF, but it was, it was crisis for sure. It is really important to think about the needs of the child, as opposed to the convenience of the adult whether that adult is the provider, or the school teacher or the whatever, and time and time again and child policy and advocacy we see systems and policies designed around what is convenient for the adults that are touching that system, as opposed to thinking about what the need of the child is, and whether or not it's convenient, how to serve that need like whether it's convenient to me or to, you know, we see this everywhere where they're not childcare facilities open in the evenings when people have to work in the evenings. They're not doctors offices and providers open on on weekends or in the evenings, and so things like that are just you have to think about where the barriers are for the people. Okay. I was exhausted from years of trying to help my son and I was scared. And nobody wants to call the police on your kid, like this is not a good starting place. But you get exhausted and scared and you just have to, you just are trying to filter through lots of advice and you do what you can figure out. And that's that, I think. I think that's just super important to remember. But what I didn't know is that success was possible we came out of that crisis treatment facility. I had no, I felt like we're the, I had no idea if we would be successful or not. And I was exhausted to gave me a few days to sleep. And I was still scared. But there wasn't anyone to help, help me, or my ex husband know how hard the work is or know how long the work was going to be to help my son. So I think it's important to remember to give respite and patience, and you help with forward thinking for the family and for the youth. And be there, like, even after you let go of that family, some of the best social workers I know some of the best teachers I know are still there and you know they're there. Even though it's hard and inconvenient for them to be there. Back in the mix so re entry. I mean, obviously I could wax poetic about this experience for like, I probably will for the next like 10 years of my life but I'm trying to keep it short re entry was a thing. You know, my son was was in about a week or a little less than a week and we didn't know what to expect we didn't know when he was going to come home, or what to do when he got home. Other than the Prozac. There wasn't a whole lot of re entry planning there was a prescription for Prozac, and a, a order to come back to see a psychiatrist, 30 days later. And that was like, that was all I got. That was it. And that was all he got. And it wasn't helpful. I mean it. It wasn't. I didn't even get another number and we will get to this but that well, it's in this slide but, and not only was it frustrating to get that, but the psychiatrist appointment was at the same facility that my son felt like he was being incarcerated in. It was across the street, it was the same address same street. And for, for my son and many of, according to him many of his peers and to friends of his that I've talked to who've had crisis intervention. It was like being incarcerated. It was not fun for them it was not helpful. We're taking away their freedom and asking them to behave themselves and if they can't behave themselves they get they get medicated and not really thinking harder so their feeling is like you're just okay first you're going to do this to me and then you're going to throw me back out into all the same places that I was. Right, and I can't begin to tell you, you know, we've since talked about it but for instance, you know, similar with with rehab for drug use substance use. I know a lot of kids who are my son's friends who came out and the first thing they did was find a way to go get high. Because there wasn't a plan and because they felt like they had been incarcerated in the system that's supposed to be helping them become whole. So that's another story. But anyway, what I would recommend is think about reentry like from the minute that that child touches a system you think about how that child is going to what that what our goals are for the child to leave the system and what our goals are for the family to leave the system and if the system isn't working, what do we need to fix, like building the planes we fly to make it work. So you want to make sure that you have a therapeutic handoff if you're the behavioral health provider, a therapeutic handoff to schools and community and home and a plan that's more than two prescriptions and facilitate a conversation, a lot of this stuff that the work I do, whether it's juvenile justice or child welfare or mental health, or even physical health. The two way conversation for children to not just be able to talk to their therapist but to be to need some facilitation to speak to teachers to speak to principals to speak to their primary care physician to speak to their, their brother or their sister their parent or their caregiver. And sometimes that needs facilitation and not necessarily in a group therapy kind of way and sometimes it's hard to get whole families to go to therapy but there, there are other ways that we can find that we can think of to facilitate to a conversations for kids to help them ask the adults for the change that those kids need. Think about how to weave a carpet for folks to walk down as they reenter so where the after school providers, where are, what are you doing, what is the reentry for schools and this. I'm not just ice when I say reentry I don't mean just from a crisis stabilization unit, I mean from PRTF I mean from juvenile justice facility. I mean from just going to a therapy appointment and coming back out. Because once you leave that's you know what we hope to save space. We're still going back out into the big, big scary world. And so what are we doing to build other systems or to touch other systems like job training mentoring communications hobbies, what are we doing to help to actively more proactively help those things happen, which are great supports for kids and families. Crimes of omission. Okay, let me see. So, crimes of omission is mostly about the questions we're asking. I know that when I do my work, and as I have thought more about my own lived experience with my son. I feel like we some of the questions were just missing, we're just not asking the right questions so how do we measure success. And I'm just going to read this whole list I had. Do we measure recidivism of kids who've experienced acute and high end care as a systems do we look at how often those kids go back in, do we look at, at, do they return to the facility do they return to self harm to they return to attempting or completing suicide. How many follow up on the psychiatric care that that little prescription that they're given and if they don't. Why don't they like and if they do and it doesn't work. Why didn't it work. Like it's not, it's not necessarily on them I find it hard to put on on the family, because there are other things that could have helped them be successful. So things that can prevent success that I would recommend thinking about where, where, what was the origin of the problem, and how is it that all this stuff we've talked about already, where, where are we asking them to go to get the help they need. Is it appropriate, is it welcoming, is it a place that they don't already have trauma from the color culture comprehension training of the provider. We talked about that today. Pair commitment is their limited payer commitment is the insurance going to cover what they need. Right, that's a problem that's a policy problem, a lot of times is it going to be denied. Is there a limit. Are they getting enough. And is there forgiveness and keeping appointments. Right, so the appointment thing is hard for many families we all know that access is hard for families and sometimes it's hard for really good reasons for them it's like. Where is the forgiveness and I guess I'm just trying to get it what is the real weak link in a system. So, and to the point about paying for things advocate for insurers to fund mid range residential supports before care is needed. I was told that every before my son hit a total deep end crisis. When I was looking for help with resident with psychiatric residential treatment facilities or other help, either I insurance didn't cover it, or insurance wouldn't cover it until he had been in acute crisis care, at least one time if not three times. So you wait until somebody is at the end of the whip before it can before your insurance or whatever will pay for it, and it leaves everybody like in it's just disastrous. I mean if you can't see why then I don't know if I can help potential for change. So, if we do what we did we'll get we always got like if we continue to not pay for things will get we always got if we continue to not think about the acute care or any other piece of the system in a silo if we continue to think about it that way we'll smooth trajectory for children. If we continue to not address micro aggressions or systemic racism or historical racism, or any another myriad of things, you know, income disparities all of those things will get what we always got. So don't treat any of these things in a silo. I think harder also think big and little. One of the things, this goes to the microaggression thing, I think two is the words have effect. And, and the words that we use are really, really important, and we do people do make mistakes but they the words if you're a professional providing service for a kid or family in a system. Either words will have an effect, they will have two things that will have it will be effective in a good or bad way or they'd be in a not effective at all. And so the words used are really important. And just as important are the systems that we use and how we use them, and how we think about them so when we think about what we need to change I highly advocate for people to think big in terms of policy and systems, and small in terms of what we say to each other. And whether that's a provider to patient colleague to colleague student to teacher whatever the, the big and small, all will have to work at the same time. And then the other thing I would say is don't be afraid to reach across the system and provider divide. I grew up with a lot of problems with juvenile court and schools because they don't talk to each other. Even juvenile court and child welfare don't always talk to each other and their data systems will talk to each other and all these things, but the human beings don't talk to each other and because they're just like well that's not what I do I don't know this person. If you're worried about one of your, your clients to call the principal call the teacher like there's no and they don't have to tell you about their academic progress or whatever but but how can we work together to help these kids. And that's I don't know how long I talked it was probably really long. But I hope that that's helpful, helpful to some of you, and thanks. Thank you for letting me share.

microaggressions

healthcare settings

triangle model

empathy

black parents

autism

disparities

healthcare professionals

black families

mental health system

holistic approach