Using Storytelling to Connect Research and Lived Experience

EPISODE #4
December 1, 2021

One of the most important tools to add to your toolbelt as an advocate or a researcher is the power of storytelling. Sharing stories of lived experiences is a powerful tool that can evoke empathy, compassion, and an understanding of different walks of life.

Today, Jeiri is joined by Morénike Giwa Onaiwu, an educator, writer, public speaker, parent, global advocate, a professional and disabled non-binary woman of color, and daughter of immigrants. They are also a member of the Autistic Researcher Review Board for the Autism Intervention Research Network on Physical Health (AIR-P) project. She is passionate about human rights, justice, and inclusion with her vast advocacy work related to HIV awareness, gender disability, racial equity, and more.

Morénike joins the show today to share their expertise on storytelling, especially when it comes to including lived experiences in research and writing. They share their knowledge on researching and how new researchers can frame their process. Jeiri and Morénike both tell their stories of being a young advocate as a bilingual person of color. They have an important discussion on the need for respectful, affirming, and accurate language and the difference between person-first language versus identity-first language.

This is an eye-opening conversation about the immersive power of storytelling and how stories fuel change within advocacy and research. Tune in and get ready to be inspired.

View all episodes and transcripts at http://www.aucd.org/podcast

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.

Transcript:

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: Morénike Giwa Onaiwu is an educator, writer, public speaker, parent, and global advocate, a professional and disabled non-binary woman of color and daughter of immigrants. Morénike is a part of a multicultural neurodiverse and zero different family. She is passionate about human rights, justice, and inclusion. with her vast advocacy work related to HIV awareness, gender disability, racial equity, and more Morénike is a member of the autistic research review board for the autism and prevention research network on physical health AIR-P project. And is a former LEND trainee. You have so many intersecting identities. One of the things that really took me from what I was reading, you include the LEND experience in research. And what was that like?

Morénike Giwa Onaiwu: It started out where the first time actually that I participated in research, I found out from a friend and she was talking about something and blah, blah, blah. And she was like, oh, they didn't, you know, we were using the same provider at the time. You weren't approached about this, this and the other. And I'm like, no, she's like, oh, what about last year?  blah, blah, blah, blah. And I'm like, no. And then she just turned beat red and got, I'm so sorry. And I was like, what? She's like, oh, I didn't realize maybe they're just not asking people of color to be involved. I was thinking what? I was like, what century are we in? Like, and so the next time I had appointment, I kind of charged them up. I was like, I understand you had been having these different studies and different things going on and we haven't been approached about it. Oh, we just didn't want to bother you. You have a lot going on. I said, well, isn't, that more the reason why I should be asked because I have a lot going on. So I can be more representative of people's lives, you know? And so it will be research that actually, you know, looks like that of the people that, you know, hopefully it's going to help. Let me at least have a chance to say no, like don't just answer for me. And so they apologize. And I said, well, I said, I want to know about every study you all have, you know, and this is the Texas medical center, one of the biggest medical centers in the world. So where this hospital is located and so true to their word, they started sending me all these different emails and I started reviewing things. And obviously you can't enroll in everything, but I started really getting involved and I started really noticing how terribly some of these studies worded, how awful some of the advertisements were, you know, that they were giving to people for recruiting, how they informed consent sometimes in the summaries were really vague. And so I just, you know, so I started giving some feedback or asking questions and they asked me to join the community advisory board. And I did. And then just kind of from there, I just caught the bug. I think practice is important too. And I'm actually really a fan of practice based research as well. But I just feel like it helps you. It really is kind of like that first defense, like finding things out, kind of going in, scoping out things, figuring things out and helping to influence and inform and develop everything that we're going to do later. Researchers are very necessary Canary in the coal mine in a lot of ways. And I feel like having the voices of the most impacted only makes the research richer. Otherwise it's just really not applicable to most people.

Jeiri Flores: Shout out to all the research gods. I'm just not one of them. I just don't have, like writing gives me anxiety and then research.

Morénike Giwa Onaiwu: You know, I used to feel the same way. I was like, this is, why would somebody do this? This is so boring.

Jeiri Flores: That's why I'm struggling through this master's program. Because the research piece I will present to you any day of the week, I don't care. But the research and the writing piece and I always just feel like I pick the topics that have the least literature out there. So it's like, I have a talent.

Morénike Giwa Onaiwu: Yes. That can be hard when you're looking like, is there anything out here literature? Like some tweets or something, you know, like for me it started to really help my brain unlock. It's almost like when I'm reading things, I'm reading between the lines. Okay, well, who's not here. What's not mentioned, what questions did they not ask? How did you approach people about this? Why did you, you know, like it's like, I look at it and it's almost kind of like playing some kind of a game, cause like I look at it and I see the areas where we could add more. It's like if you're tasting somebody's stew and you're like, oh my gosh, this could be really good if they put some more seasoning, it doesn't have enough of this. And that's how I see research. I feel like all of our brains as humans were natural researchers, we are inquisitive. That's why we've got stuff like Alexa and Siri. That's why Google exists. We want to know things. We want to figure things out. We want to experience things in the world around us. But I think that research has been made to be this removed clinical sterile entity. When you take that and you mix it with formal research, then you have just such rich body of information that can really help people and change lives. I'm not into again, more power to anyone who's into like, you know, the statistical powering of this and all of that type of stuff. That part isn't my strength. But it's like the story in it that really gets me.

Jeiri Flores: So would you say that your work in research changed the way you work as an advocate?

Morénike Giwa Onaiwu: I think so Yes, I absolutely do. because from my own experience and then from the people who mentored me, a lot of them were older luminaries who had been involved in a lot of the early HIV research. You know, people who had been in act up or mentored by people in act up. And so the perspective that I came into with their help and then from my own experience of feeling, you know, excluded, you know, just that little personal story, but obviously the bigger picture of how people have been disenfranchised unfortunately by research in so many ways from Henrietta Lacks to so many other things throughout the years, I feel like these people have the expectation that the bare minimum is you're going to have the community involved. You're going to have listen to the voices. We are partners. We have something to share. And so do you and together, and we can't do this alone as community cause we don't have the capacity and the resources and, and some of the, you know, knowledge that principal investigators   have. And the investigators certainly can't do it without us because studies that are just designed from the ivory tower that do not take into account the important elements of what the community needs and wants to hear are going to fail. You know, they're not going to enroll, they're not going to do, they're not going to do well. And so together, it just makes more sense. So even though it was a forced marriage in the beginning where they weren't invited and they kind of had to bum rush, people eventually were able to see and recognize the value of having them there. So my perspective from the very beginning is of course, you've got at least one, if not more community individuals who are on the protocol team from the very beginning, from when it's still a concept in development and all the way through the study and on the calls and you know, going to the meetings and through the end of it, you know, after enrollment and even when you're assessing the data. of course you've got community people who can vote. It was shocking to me when I started to realize that that was not the status quo. Like most of the time, quote unquote community involvement is researchers doing a whole bunch of stuff and inside staff who are not necessarily all researchers and then bringing in some community folks for a nice little Jason's deli dinner and gift card, ask some little questions and then boom, you've got community buy-In, like what?

Jeiri Flores: No, I mean, I feel like that's not a mutually beneficial relationship and I guess that's some of my beef with research sometimes. You know what I mean? I think for me it's how do we make sure that this relationship is mutually beneficial? I haven't always, you know, participated in some of those research cause I study sociology. So I get the importance of research. I'm not trying to downgrade that at all, but I think where my brain struggles with it is how like some like Henrietta Lacks, like when I read Henrietta life story, I was mad for days because you know how dare you do this to this woman, but not just her are her family. Like how dare you do this to them too. And then, you know, to think that pieces of Henrietta Lacks lives in labs all over the place and yet you don't recognize her for who she is or for what she means or what she stands for. You know, I have a difficult time marrying that. but I wanted to ask you something else. So you said act up, you know, you had some mentors from act up, so did they teach you like the power of how to tell stories? Cause their storytelling skills was on point. I mean I just watched movies cause I can't say that I saw them like, like I wasn't there or none of that, but I definitely have seen documentaries and just different movies of how powerful they really were in terms of telling their stories and getting people to really understand the severity of things that were taking place at the time.

Morénike Giwa Onaiwu: I feel like almost by being immersed in these people's presence that you learn that way. Cause I remember coming in thinking, okay, I'm young. All these people are old enough to be my parents. I don't know a whole lot. I'm brown, you know, all like thinking all these different things and just being a little intimidated and thinking, okay, I consider myself intelligent, but I don't know these GRE words and all these words and all these. they encouraged me and others who were coming in new that we are not born knowing these things, but they want us to ask questions and to demonstrate interest and share what we really feel until people would just share their real lives. It was just the earnestness, it's even to me now just like really moving it's like how people who had been thrown away and ignored by society were like, no, we're not giving up.  We have something to say we deserve to be heard and how it's transformed research as a whole. You know, like when I think about how it's all forms of research have totally been revitalized by the work of these big, very determined community people. And one thing that was super exciting for me is to learn how diverse the movement was because you know, when you watch it on TV, you think it okay, it's just all the gay white males. And yes, there were tons of gay white males, but there were always people of color, there always women and so forth. It was always a hodgepodge group that looked like the community and operated like community. They'd be in there asking questions of this researcher, you know, or that researcher or sharing experiences. And then they'd pop off to the bar.

Jeiri Flores: So I have always been kind of an advocate before I even knew what the word was because my parents don't speak English. So like if I didn't speak for my mom or myself, not to say that I like was trying to be her, but to make sure that her presence was respected in a room. So I've always been her translator. You know what I mean? Like as I grew up, which kind of happens when your parents don't speak English and you do like your first gen to get it. But I had always been in, you know, just kind of an advocate in some shape way or form, but in the disability realm, rarely do you see people of color. And when I went to my first protest, it was in DC. I had lied to my professors. It was my senior year in college. I lied to my professors and said that I had gotten a grant and I had to go to this protest if not, they wanted their money back. And there was this whole ordeal, but it was the first time I saw a black woman on the front line and she was one of the leaders and I was like, oh my God, auntie, you see me? Cause I see you. And you know what? it took me so long, I was maybe 22. Like this is the first time ever that I had seen someone of color, you know, on the front line being in leadership roles and really pushing forward. And just within herself, she's telling her own story as she's making up the chance and she's walking around and she had [11:14 inaudible] but like, it was just, she was so comfortable just being her, but it took a long time for me to see something like this. So I could definitely vibe what you're saying. Like you know, it took a long time for me to see that, but you know, once you see it, there's no going back, right? Like you're so empowered by that, that you just haven't have to push forward and start sharing your story in your own right.

Morénike Giwa Onaiwu: You know what's so interesting to me about what you just said too, is like you mentioned being first gen my parents, you know, I've seen a lot, but I was fortunate in that I didn't have to translate for my parents in that aspect, but I did have situations where people would look at me like they couldn't understand what they were saying because of the thickness of their accents. And I just really feel like, was it really that thick or did your brain just choose to lock up because you heard, you know, an accented voice. But I worked for several years in refugee resettlement and a lot of the children, you know, would interpret for their parents in certain circumstances where you didn't have a formal interpreter or a translator. And it was the same kind of thing. It was like second nature. It wasn't like, oh, this is just what I do. It wasn't like, they didn't see that you're literally a bridge between two worlds, you know.

Jeiri Flores: My mom made sure that I knew Spanish cause anywhere I'm at, she's putting me on the job.  if we are at Walmart and there's an old lady who came, she didn't even know if they speak Spanish, if she just has an inkling that she might need a translator I'm being sent. And it's so funny because my little brother, he doesn't speak Spanish. So it's so funny cause we are five years removed, but the pressure is so much less for him because he's not first gen. And so that really shaped my world as an advocate. You know, my experience because if it wasn't for that, I don't really know who I would be.

Morénike Giwa Onaiwu: And it's important to bring those parts of oneself into research. lately, things have changed. Like I think about educators and people who are, you know, artists and different craft and how people bring a part of themselves automatically into the work. And I think as to not taint the research or to be objective, researchers have been cautioned to kind of hold back. But I feel like, you know, when we look at collaborative research or doing things that are interdisciplinary and really connecting with people and participatory in action research, you know, you don't want to bias the work itself, but you can't hold back. I mean, why are you in this? You're in it for a reason. Cause there's other things you could do that pay much more. You know what I mean? So you're in this because you care, there's something about this puzzle that you're trying to figure out. There's something about what you're contributing that is deeply meaningful to you. And I think when people can expose that part of themselves to others, then I don't know. I just feel like it becomes so much more personal. It's almost like how people are seeing folks in living rooms and dogs and stuff for the first time. Now that we're doing everything so virtually and it's making you have an understanding that there's a whole person in this entity, not just doctor whomever.

Jeiri Flores: I think that's the so important part, right? Because especially in the medical realm, in the research, in the academia realm, like we struggle to see people with dis as whole, right? Like we see parts of them, we see their diagnosis and we take that and run with this and we don't create space for them to be all of who they are. So I think that's what's really important and powerful about, you know, including someone's story as you develop whatever research paper it is or study it is that you're putting together. Because then if you notice that such and has a dog and this dog means this and this is why they do that, like it just changes the way you view people and it changes the perspective of what you think to be true. But as you grew in this work, what would you say would be one of your challenges?

Morénike Giwa Onaiwu: It's really, you know, and I know we were joking a little earlier about saying yes and saying no, but I think it is very hard for a lot of us to understand the balance and self-care aspect, how crucial that is because you can't give from an empty vessel. And so I think that learning to honor oneself, cause there is so much to do and you know, one wants to give and learn. But I think that we really do have to see self-care as an act of political warfare, as a necessity, see ourselves as worth needing some sleep, needing a break, needing to step back, and enjoying our whole lives and our whole selves. That's one thing. But I think a second thing would be just what you mentioned earlier about, you know, just the pervasive ableism. It can be so debilitating, and I'm using that word intentionally because of the ableism to read and hear your community referenced in such a negative way all the time. And for the fact that it's so insidious that people don't even think of it as being negative. They just think they're just speaking, they're just communicating. And they don't even understand that these are like bullet wounds these terms and these afflicted with symptoms, deficit, deficient.

Jeiri Flores: Special needs. That's the one that really, it triggers everything in me. Every time I see the word special needs, I'm like, if you don't eat pickles, that's a special need. If you're allergic to peanuts, like, you know what I mean? Like what are you saying to me? And so I think that's also another beef that I have with Reese search, right? Like when I read this, I'm like, but my life isn't even like this. Like what are you talking about? Or if I'm not in the research and I'm like, you can't even tell me what my future going to look like. Cause you ain't even think about me to put me in this.

Morénike Giwa Onaiwu: Yes. Like when you're looking at it, okay, that's not the most diverse research sample I've ever seen. Oh interesting, Oh, okay or like you mentioned, just the way that it written and I'm just really grateful that some people are starting to push against that. You know, like there's been community working about having like respectful and affirming an accurate language for a long time. You know, like a lot of people have been doing this work that the well project has done a lot of this. And so many other people, university of south Florida has done a lot of work there with it too. But I'm thinking there NIAID, the national institutes of allergy and infectious diseases. They have a language guide that actually that has been out for a little over a year. And it has information about how to refer to different, you know, in terms of gender inclusivity and some other terms, it has some things related to person first and identity first language and you know, some ways to try to talk about people in a matter that's less stigmatizing and it's something that they want to use across all of their branches. And so it's a guide. some years ago, there was something similar that came out where they asked people not to use terms such as subjects, you know, instead to use participants and sent an official memo out to a lot of the research networks about that. So I'm seeing change. I wish it was proactive instead of retroactive, but I'll take it.

Jeiri Flores: Right. Any small game. And that makes sense. I think we're pushing in the DD realm for person first language or, you know, whatever it is that a person prefers cause person first and versus not whatever, it is a complicated conversation.

Morénike Giwa Onaiwu: So it's really interesting. Like when I think about the person first versus identity first language, because people get on their soap boxes and you know, so some people will say identity first language is what we need to use because person first language is othering. You have to separate yourself from the condition or you have to remind yourself that I'm a person. And then on the flip side person first language is better than identity. You know, I'm a person, I'm the diagnosis I have or the conditions that I have are just a part of who I am. They're not me. And so it's like, I try to explain to people it's not even really about the usage of the term, obviously like with anything else, like with pronouns or what have you want to be respectful and use what a person or a community's preference is understanding that it might not be what you think it is.  You know, some people want to use one or the other, some people use them interchangeably, but what I try to explain to people when they start saying how much they hate person first language, etcetera, I explain, I remind them, I was like, you do need to understand that person, person language was very radical when it came out, this was a huge deal. You see it as this demure wanting to be disparaging of yourself and you don't understand how powerful it was for people to assert their personhood when they were deemed as other, as less than nothing. But at the same time, yes, identity first language has its place. You know, we don't say person with blackness, person with teacherness, you know, you say teacher, you know, or whatever, a black person or so we use identity first for a lot of things, whether they're neutral or positive, because I think if people see disability as a negative thing, when it isn't, it's just a thing. And so I try to explain to some people that it's not all cut and dry, like, so I talked to them about the HIV community, about how there was a time when people would say, you know, HIV positive and then like the Denver principles came out, you know? And that was like the declaration of independence, 95 theses, you know, everything. And it was like, basically we are not victims. We are not helpless. And they were using their version of person first language. We are people with AIDS, you know, we're not patients. And then it has evolved to now people saying, we are people living with HIV and even the acronym, you'll see PLWH, PLWHA or different ways that people will write it because they want to emphasize the living, because they're like technological advances and whatnot have, this is not a death sentence. This is, we got a chronic condition that people are living with and they're living their full lives and they're getting married and they're having kids and they're having sex and they're having jobs and they're having lives and traveling and whatever, and they're living and they're not dropping dead tomorrow. And so they want to emphasize the living. So for the people who try to say, when you put the person first, you're trying to separate your yourself from the condition. I'm like, no, not necessarily in this case, they're very much asserting themselves as living their lives with this condition. So it's not something that's cut and dry. So like, when I hear people saying, don't say autistic, say person with autism, that's stigmatizing. Or when I say, oh, don't say person with autism, say, you know, autistic, I'm thinking, what's your rationale behind what you are using? that's what I want to know, more than what you're saying, what's the reason. are you saying person with autism, Because you want to quote unquote, separate yourself from my son may have autism, but autism does not have him. That's problematic in itself, your mindset.

Jeiri Flores: I think really what you're pushing towards. And that's where I feel I'm in the same campus. It is about who has the power to make that decision. So, because if I want to be called disabled, then that's my personal preference. Like, and so I don't want you to tell me that, no, that's not who you are. How you going to tell me who I am. I make that decision. So I do something in my signature. It's taking some time, but we now state our pronouns. it's part of our normal exchange. So what I did right under my pronouns, I put disabled because I didn't want to have to have this conversation with anyone anymore. Like you need help to identify me. I stand proud in this piece of my identity. This is not only just something that I am. This is something, this is a place of pride for me. And it took me a long time to get here. So I'm not traveling back anymore. And so I put that right in my signature because I was like, you know, I'm tired of having this back and forth. And if we can transition and change our thinking in the way we communicate by stating our pronouns, and we can also do the same by stating where we are when it comes to person first or identity first. And I was told by someone like, oh, well, if you want to make it the norm, and you have to take that step to do it. So I was like, all right, say less. I'll put it in my signature and it just kind of lives there. And sometimes people ask questions and sometimes people don't. But I think that really ultimately, like we are saying, the power lies in the person and you have to respect whatever that person, you know, decides, and says it is.

Morénike Giwa Onaiwu: That's all it is. You have to get over it. You have to overcome it, you know, I'm thinking this is a part of life. And if you live long enough, we're all, everyone's going to have a disability at some point, because of the ones that are age related. But it's a part of the human identity and society.

Jeiri Flores: And I live like, I have a good time. Yeah. I'm not going to pretend like every day is roses, but I have a great time. You know what I mean? And I have great experiences, so don't null and void them because you know, is what you see on TV or what you read in the paper or whatever. Yes, Some things are difficult, but I'm living life. And so you should respect that and give me the respect that I deserve. You know, advocacy has taken such a huge leaps and bounds because we're recognizing who has power and how their stories have power and how they change things.

Morénike Giwa Onaiwu: Absolutely. And that's why like, people need to be careful. Like I think that people don't real realize how deeply interwoven ableism is in just everything in the media, in literature, in language, in so many different things. And so people don't realize, and that's why, like, I think about how you can open up a peer view journal right now, 2021, and reading about, you know, something related to HIV and they'll be talking about HIV infected or people who are infected or uninfected. I'm like, whoa, infection really do we go around and say, oh, we've got the flu infection? We don't, you know, that's ridiculous. The only way to get something that's a virus is to be infected with it. So that's understood, there's no reason to say that. And so I think that's the same thing. Like when I think about other conditions, when people, how are people addressing things Like, are they someone is wheelchair bound as opposed to their wheelchair user? Cause they're not bound by anything. It gives you freedom.

Jeiri Flores: And I had to explain it at a panel. It was crazy. Cause I had a whole attitude once I heard it. And I had to like check myself, cause you know, on a panel you are not supposed to really have this visceral response, but the woman said it and I was like, you think I'm bound to this? Like I wouldn't be here without the wheelchair. So I wouldn't even be on this stage with you having this conversation. If I was bound to something, I was like, this is giving me freedom. I can move around. I can do this. And these are things that I couldn't do if I didn't have this chair, like you are literally insulting something that's like my, one of my most prized possessions because my world changed when I got my power chair, I had so much more autonomy that it wasn't even something I thought about before that. So this is like why it's so important to tell real stories. And so I think we want to transition and really end here in asking you, what would your advice be to other re searchers who are getting themselves started in the process and really starting to look at how they want to frame their research and the work that they do.

Morénike Giwa Onaiwu: I would encourage them. And I understand that people, they talk about the importance of mentoring and you know, like more seasoned researchers who kind of take emerging researchers or junior researchers under their wing and support them. And I think that is all great, but