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Understanding the Experiences of Black Mothers in the Disability Community

February 23, 2022

Representation is essential in advocacy work and the push for legislation. When it comes to autism and disability advocacy, listening, engaging, and understanding the experiences of people of color is crucial to changing the narrative. Elizabeth Morgan joins the show to help us understand the importance of connecting with stories of people of color with disabilities and their families.

Elizabeth is an Assistant Professor in Educational Leadership at the University of California, Sacramento, and program coordinator for the CED at the Mind Institute. Her area of research includes early childhood and early intervention services with a specific interest in underrepresented populations.

Jeiri and Elizabeth’s conversation explores the ways in which representation matters. Elizabeth explains the importance of bringing pieces of your identity as a person of color into the classroom and curriculum. She also takes us behind the scenes of her thesis, how she dug deep into the conversations surrounding disparities, and why she felt empowered as a Black mother with a learning disability to create an impact by simply being herself.

Elizabeth also speaks truth to power, of the dangers of terms and labels. She sparks the conversation of why a careless approach to language can be a huge disservice to people of color and people of color with disabilities.

This is an important conversation that highlights the multifaceted nature of advocacy. Tune in as Elizabeth and Jeiri share the importance of highlighting Black and Brown voices, and why we should fight for systems that work for everyone.

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This episode was funded by the Administration for Community Living through technical assistance contract # HHSP233201600066C. The contents do not necessarily reflect the views or policies of the Administration on Community Living, US Department of Health and Human Services, or the US Government.


Welcome to AUCD Network Narratives, where we share real stories from our members. I'm your host, Jeiri Flores Advocacy Specialist at the Strong Center for Developmental Disabilities and the co-chair for the Council on Leadership and Advocacy. Join us as we hear from inspiring leaders within our network working to make a change.

Jeiri Flores: Welcome back everybody. We are here today with one of my faves, Dr. Elizabeth Holiday Morgan, who is an assistant professor in educational leadership at university of California Sacramento and program coordinator for the CEDD at the mind Institute. Her area of research focus includes early childhood and early intervention services with a specific interest in underrepresented populations. When she isn't thinking about autism service equity, Elizabeth enjoys the theater and spending time with her family, their dog, and Billy Jean. Is she named Billy Jean after Michael Jackson?

Dr. Elizabeth: Yes, absolutely. The Michael Jackson song.

Jeiri Flores: So, you know, when you decided to go to get your PhD, what was one of like your motivating factors? What really pushed you?

Dr. Elizabeth: So, first of all, thank you again for the invitation I'm honored to be here. And just to be able to tell a little bit about my story, but specifically when it came to why I decided to go through the hellish process of getting a PhD, it really was because I realized out of my lived experience, that there was a lack of literature when it came to the experience of having a child on the autism spectrum and also being black. So I am a black woman. I am a scholar of color, mother scholar, and I also have a child that's on the autism spectrum. And I also am an educator by training. So I started off as a teacher and then I became a school administrator. And then I taught for the community college system for many years and worked for various organizations. And what I noticed was there was a theme when I looked at what research had to say about the experience of navigating services or advocating for children, we really had no point of reference to know what the experience was from the view and the lens, and even thinking about race and how black people and people of color were experiencing and navigating these systems. So I was in the field and having this lived experience for over 16 years before I decided to go back to get a PhD so that I could be a part of really contributing to the body of knowledge, to really support bringing the voices that have not been heard.

Jeiri Flores: It's crazy. When you first started talking, I'm getting my master's right now, and it's not an enjoyable process and it's a lot shorter than a PhD. So I'm getting my master's in human development. And there is an every class that I go to either I have to bring up like, well, we people of color do exist in this human development field. Why aren't we represented in your syllabus or in your teachings? You know, I have to bring up the disability experience. It's like, well, how are you talking about humans? And acting like this isn't real. So like every step of the way I have to bring pieces of my identity into the classroom, into that space, because, you know, they're non-existent, if I don't, you know what I mean? Like not that is my job, but I feel like it kind of is. And that's really frustrating because it's like, not only am I a student, but I also have to somehow be the teacher to the professor. And so there's such a fine line that you have to walk.

Dr. Elizabeth: Yeah. Well, I mean, honestly, that's the burden that we have because the truth is it's not that we are not there.

Jeiri Flores: We don't exist, right?

Dr. Elizabeth: Right. It's an eraser that has taken place. And what I really love to do is to make sure that the real authentic experience, the story, the power that is within these experiences is documented. That's the piece that I really feel very passionate about, because like you said, Jeiri we have so many of our programs in our institutions that putting out so many scholars about not given a real holistic experience of development or education or psychology, right. Because we're not including people of color, right. We're not including people with disabilities. We're not including people with intersectional identities, which means that we're not really educating. We're not really doing our job. And so it really is in everyone's best interest that we are having a more, if, you know, if you're a quantitative scholar, a more generalizable type of educational approach when you are, you know, supporting student learning that are going through these advanced degrees, but it's not happening. And so then it's on us, the scholars of color and the people that are coming into these programs out of all the frustration to say, Hey, you know, what about us? What about our story? What about our experience and our strengths that we're bringing to the table.

Jeiri Flores: So I first met you a couple of years ago and I was just like, Ooh, somebody that looked like me. I mean, it doesn't happen often.
So I'm like, hi. And this is before like, knowing too much of your story, too much of your journey. This is just me like over it, I just look for teammates in every space that I go into. And so being young and a little rough around the edges and, you know, meeting someone that looked like me, I mean, I'm a little rougher to you, but I'd be meeting someone that looked like me. And then, you know, I always check in with you because I never know if I'm on key or if I’m, you know, out of place somewhere, that's what made me admire you though. Like you was just bright and you was like, I'm here. And you know, we're going to get it done. And I think that that's part of the difference between me and you is I can't do research. Like it's just not in my wheelhouse. It's just also not in my interest. Like, I'm just, I don't know if it's like the kid in me that I can't sit this long and read all of this, like this ain't my business. I just very much so love my job because I'm supported by facts. Like, you know, the universe just takes care of me, but when we transitioned to that, that's so important, right. To have people of color be participants in the research, but also be the ones doing the research and being the ones, you know, narrating the stories. So when you think about when you're writing your thesis and when you were working with, you know, I'm assuming you have a sample size of folks and families that you're talking to, what was that like, where did you want to take it? Did you get to where you wanted to go?

Dr. Elizabeth: First of all, you can do anything you want to, right. So like what you said about, you know, your interest. I think that's the key part, right. You know, for me, I'm not interested in reading a whole bunch of stuff and, you know, doing like, that wasn't my interest either. I'm actually a person with a learning disability. So this stuff comes extra hard. You know, having to do all of the reading and the writing. But for me, it's just that I knew I had to do it because if, like you said, representation matters, right. We have to be around the table. And that's what I love. If we can really be our authentic selves and not let society's expectations of us and ideas of us hinder us from doing what we really are called to do, we can make an amazing impact just being us. You don't have to change. You don't have to be anything. You just can be yourself and operate in the things that you love to do. So for me, it's just, I love to speak truth to power. Like I love to be able to say, Hey, you know what? We're about to have a real conversation. And we're about to really dig in deep to, you know, what is the heart of some of these issues. When we're talking about disparities, they're really red flags for institutional inequalities, connected to racism, sexism, ableism, classism, heteronormative, all of these things are all connected to bigger oppressive systems. And so let's really call them out for what they are, do the work to undo the damage and really reconstruct systems so that they really are equitable. Those are the things that we have to do. And so for me, my dissertation project in particular, I was interviewing black mothers who had children diagnosed on the autism spectrum.
And I was looking to be able to really document, but learn more about the process of them developing their advocacy. So, cause all we have, when we're talking about black parenthood, black motherhood is deficit frameworks to really use, to think about their experience. And I know from personal experience, that's not the case. There's lots of amazing advocacy that's going on right?

Jeiri Flores: My mama is a warrior. Ain't nobody telling me nothing about my mama. She is changing the world. Ain't no matter what she got to do, She is making it happen.

Dr. Elizabeth: We know that. But you know, if you read the literature, if you see what's going on in the streets, right, You know, or, you know, in the academic streets, we're not represented. And so, but this is the thing though. So the literature really dictates a whole lot more than just what's happening in the academy. So it also is referenced in policy and how policies are made and how legislation is done and how practice. So when we see what's happening inside of schools, there are snippets of what's being said in some of the academic literature, that's being translated into curriculum and translated into practice. And so it really does matter. What's being said and how it's being said, and who's represented all those things really matter. So that's the reason why I really wanted to do this work and found it so exciting because it was thinking about, you know, what are the assets, right? What are some of the powerful advocacy skills that these mothers were showing and that they had and have and how those things within the context that is nurturing can really improve that these mothers are doing their thing. You know, they really are doing some amazing advocacy, but context is key.

Jeiri Flores: For sure. I mean, this made me really think of when I graduated college. So I'm a first-generation college student, right? This is approaching even a college campus as a whole new ordeal for my family because you know, no one had seen it, you know, my family migrated here and they just trying to figure out life. So college even didn't even seem real to me, even when I was a senior in high school, I was like, I don't know if we can afford that. But I was graduated and that was a surprise to me, not to my parents. Cause they thought I was thriving. I was killing it. They just didn't know what it really looked like. And so I get on this elevator and I’ll never forget this. There is this older lady, older, black lady. She looked at me because I'm telling my cousin like, yo, I can't believe we're here. Like I got my cap and gown on like I'm in route to the gym to go get my degree. And the lady says, baby boo, if not you then who? And I’ll never forget that in my whole entire life because she don't even get that, that she shaped me for after that. You know what I mean? So every space that I go into is always like, if not me then who and that's exactly what it sounds like for you, right? Like if not you, then who? Who else was going to tell that story? Cause you saw the gap, then this makes it bigger, right? Like this is not even just about your research. Just makes it like a celebration for the black women that you got a chance to speak to who could share their stories with you. And what was that like for you?

Dr. Elizabeth: I feel privileged. I feel so privileged and honored that the women that I connected with trusted me enough with their story. Because the truth is when you are taking on this identity as a researcher, you're also taking on the baggage of the institutions and how there are, there's harm that's being done from researchers and academic and medical institutions against people of color documented, you know, widely known in widely unknown, right? These are the things that you're taking on. So I felt honored that they trusted me, but I also knew that I needed to make sure that I was very careful with doing them justice right? And doing their story justice. So my approach was to use this way of being able to do research where I am constantly, co-creating the story, co-creating the message that's going to be sent out. So you know, my people that I participated, that participated in my study, they're not my participants, they're my collaborators. They are the people that trusted me enough to be able to kind of take this information, all this rich information that they gave me and try to synthesize the story of advocacy development for black mothers who had children on the autism spectrum.

Jeiri Flores: And that is huge. I mean, I'm not a mama, so I have no kids. I've definitely helped raised a lot of people's kids, but I don't have any kids. But I think about as a person who happens to be disabled, who has definitely had their story told in many different ways, I’ve only been an author maybe once or twice, you know what I mean? Like I’ve only been considered or even a collaborator in certain projects once or twice. But they've definitely taken my words and use them for their benefit without including me in that. And so that's huge to put that kind of power in their hands. So my brother is 26. We were born in the nineties. So, you know, in the nineties, ADHD was like their favorite diagnosis for all kids who were colored in my opinion. But if you met my brother from the work that I’ve done, not to say that I'm some sort of therapist and I can diagnose him, but I would say that my brother would fall somewhere on the spectrum. And if you meet him and how he fixed based on certain things, and there's just certain things that he does. And I'm like, dang. And so I’ve had this conversation with my mom where she's like, well, should I have done something different? I'm like, mom, like you did the best of what you got. She carried this pink and red book that she had because that's what they gave her, like the breakdown what ADHD was. And she, I remember her carrying her book everywhere to every appointment, to everything, to figure out, you know, how to help my little brother. And it's like, you know, you have to have the tools to really do what you need to do, right? So we don't have the tools as people of color to kind of push ahead then you make do with what you got, right. Which is what we've done historically forever. So how do we continue to change the narrative of what autism looks like or what these parents who have been advocating for their kids for years, you know, trying to make sure that their kids get their needs met, not just on an educational level, but on a personal level. How do we change that narrative? How do we continue to push forward in that?

Dr. Elizabeth: That is the part where we have to make sure that those stories are heard. So that's my personal passion is really doing the work of getting those stories out, changing that narrative. We have to do that. There's bigger issues here, right? So if you look at, you know, children, black children, we have under identification during early intervention, and then you have over identification for disability and being qualified for special education service once you get to elementary school. So when we're thinking about developmental disabilities in particular, when you can be able to support a child as early as possible, you can be able to equip them with the types of supports that can allow them for opportunities to be able to be included and have access to information and experiences. And let's look further down the line, right? So what happens when children are excluded and when they're expelled and kicked out of general education environments, for instance, what happens is there's a pipeline, right? So then we see documented and undocumented cases when we look into our correctional facilities around the country of people with disabilities that have a huge amount of representation in these settings that have either never been diagnosed or have been diagnosed and not given the proper intervention. We can actually really do something by making sure that we are really addressing the problem and really looking at what's happening here, really dissect this thing and try to do some series intervention and reconstruction of the way things are done so that we can help children who become adults to thrive and have access and be meaningfully included.

Jeiri Flores: I mean, and I think that really just represents how ableism doesn't happen alone. You know what I mean? Like how racism doesn't happen alone. Like these things go hand in hand as, you know, as the child develops and grows. And as they interface with more systems and things just continue to grow and change and putting power in parents as hand is really a game changer, right? Like I think of, you know, if my brother was any aggressive or anything like that. He could definitely be the people you're talking about. You know what I mean? Like, he's a big dude. My brother's about six foot, one, maybe 350 pounds. Like he's a big guy. And if he was in any shape way or form aggressive, like his story could have been so different.

Dr. Elizabeth: Well, you know, I have something to say so when it comes to that, you know, that term, right? So that's something I actually had to, as a parent, I had to realize that I had to be so proactive about making sure that those terms are not labeled on my child. And it wasn't just because his autism diagnosis, but because he's a black boy. So whenever I saw reports, I had to review them thoroughly to make sure that there was nothing in there about him being aggressive or having a behavior that was violent or any of those things, because it means so much more when you're talking about a black child.

Jeiri Flores: But even just the evaluations overall, I think people don't understand how long evaluations live in disabled people's lives and how much they did say how we get treated, who, you know, when people were in our stuff, does what they believe about us before we even get through the door. And my friends and I do this thing where we don't use the word aggressive to describe people of color. It does people of color, a disservice to call us aggressive. We shy away from that. But I only said that because my brother is a big dude. And so, you know, for me, I know him for who he is, but if he's perceived in any other nature, like his life could have been.

Dr. Elizabeth: The truth is he could be seen as a threat. He seen as a threat, then he can be taken out and he could be justified. It could be justified for that. And so that's reality. And so, you know, as I'm talking to parents and even, you know, as being a parent, my son right now, he's 13. He's little. So he's still somewhat cute, but there's going to be a day he's no longer cute. So what does that mean? How frightening is that? Whereas a parent, where all you want to do, it's a basic instinct of just taking care of your children, protecting your children, but you have the reality that people are going to misunderstand them and they're going to interpret them based upon a view that can be dangerous. And so you have that situation where this is a reality, right? This is not no made up fear. What does that like an anxiety that's based upon illogical, you know, not true. Like we see everyday instances where black people and black boys in particular, but black girls, also black women are being treated and being abused, being killed. And so in the story that's not really common is that there are quite a few of these stories that have made it into mainstream people hear about that these people also have intersectional identities of having disabilities,

Jeiri Flores: Elijah.

Dr. Elizabeth: Right. Those are just signs of how the systems in themselves have done people with disabilities and people with disabilities of color, a huge disservice.

Jeiri Flores: For sure. And I think that that's one of my frustrations the most, right? You can't leave everything unsaid. And so like, because we don't highlight black and brown parents who are doing damn thing in terms of advocacy, in terms of really pushing for legislation to be different, really pushing in all these other spaces, because we don't see them and we don't hear about them. And we predominantly hear white stories. We act like they don't exist.

Dr. Elizabeth: Yeah. And we're not recognizing too. So the heart of IDA, ADA comes from civil rights legislation. So that's the heart of when we're talking about people of color had a huge role in making it happen. This is not something that, you know, oh, people of color had nothing to do with, black people had nothing to do with these laws. No, we absolutely did. Let's just be truthful about the matter we have been excluded. We have been excluded for being able to, you know, really advocate, and use the rights that we have earned for our children and for ourselves.

Jeiri Flores: Listen that's why I'm a huge fan of the black Panthers. I can't speak about none of these new revolutionaries, but you know, the black panthers belief because they did, because my issue with black lives matter is that, where is my life, bro, you know, where am I represented in this struggle that you're talking about, that you're highlighting, that you're pushing, that we want to change. And I'm not saying that they're not doing good work because I'm not ever going to stomp on what they've done, but where are the people that look like me? You know what I mean? Where are they at? But when you look at the black Panthers, they said, if everybody don't have liberation, nobody got liberation. So they're the only group historically that has been really open about saying, listen, if this don't work for everybody, it don't work for me. And you know, they were at the 504 sit-ins. They fed everybody, Brad Lomax made it his business, that access was for everybody. So I think that there's so much more to change. So for my last question for you, and thank you so much for sharing everything that you've shared. I think that what I was listening to you really, I was thinking, do you feel like your advocacy style kind of changed or grew through this process as you talk to these parents, as you shared with them about yourself, about your story, and you also be in someone who is disabled, do you feel like something changed for you? Do you feel like more empowered?

Dr. Elizabeth: I feel like anyone that engages in this type of work and says that the work doesn't change them. I don't feel like that's being sincere. I think the work is supposed to change you. That's how you know you're really engaged. I think that because I'm a part of the in-group right, within the mothers that I connected to, I definitely could identify with so much of what they shared with me. I could feel the experiences that they were talking about, and that was a beautiful thing, but there was so much else that I learned, I learned about just what it was to navigate these different systems in different parts of the country, doing it either as a single mom or doing it as, you know, a grandparent or doing it as a mother, an adoptive mom, you know so all these mothers had different perspectives, right? It was powerful because what I really feel like I learned is that even though we all have these different experiences, there is this idea that we all had a sisterhood in this experience. So there was this basic underlying, I don't know how to say, but like connecting factor that really kind of joined us, you know, allowed us to be able to engage and understand and have the discussion and to go deeper into, you know, situations instead of just being so, It wasn't, nothing was superficial about it. I love what you had talked about. Like how, if the mothers thought a little harder, I'm sure they would see that there are people in their family that are on the spectrum too. I mean, that was a huge theme that I haven't even written about yet, but that's a huge theme that all of the mothers would say, you know what, after I learned about this, I realized, you know, I looked around and I have many people in my family that are probably, you know, on the spectrum that are now homeless or have committed suicide or, you know, are in jail and prison. You know what? They just never, never understood. They just never were given the chance, but they had all these characteristics, right? So I was like, man, we need to have these discussions. You know, these are lives, these are lives. These are people's lives. These are families. We need to have these discussions. If one person is hurting, everyone's hurting, you know, so what do we need to do to be able to really address these disparities, these injustices so that we can be a better society as a whole.

Jeiri Flores: I think that just leads to a bigger conversation for our next season. I mean, as we consider, you know, culturally how much has to change when we think about disability and what that means within the black and brown community, you know, I speak Spanish and explain my job as an advocate is not the easiest, but also, you know, breaking down what disability means and what it looks like and how it operates as an identity is I'd say it's difficult. I can't speak for the culture at large, but for how I experienced the culture, it's different. And I think of that overall for black and brown people, those are bigger discussions that we need to have as we continue to grow as people. So I want to thank you for your time. I think that's it for this episode.

Dr. Elizabeth: Well, thank you.

Thank you for tuning in to AUCD Network Narratives. If this story has inspired you to make a change at your center or program, use the link in our show notes for resources and tools to help you lead on. We'd love to connect with you. So visit the AUCD website and click on the submit your story button at the top. We hope to hear from you soon.

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