Jennifer White-Johnson is a designer, photographer, art activist, and art educator. Her work focuses on the intersection of content and caregiving with an emphasis on redesigning ableist visual culture. In this interview, Jen shares her experience living with Graves’ disease and undiagnosed ADHD, as well as her son’s diagnosis of autism at age 2. When Knox was diagnosed on the spectrum, Jen began to examine the absence of Black disabled children in digital and literary media. This motivated the release of an advocacy photo zine entitled KnoxRoxs, which was intended to give visibility to children of color in the Black autistic community. Since its release, the zine has received national and international recognition, including features in AfroPunk and The 2019 Women’s March on Washington; it is also permanently archived in libraries at the The Metropolitan Museum of Art and the National Museum of Women in the Arts. As we discuss on the show, Jen believes that true allyship can only come from designing with the disability community in mind. As designer of the #BlackDisabledLivesMatter symbol (available as a free download on her website at jenwhitejohnson.com), her recent work has been instrumental in reigniting much-needed dialogue about disability justice within the Black disabled community, helping to shift stigmas while aiming to eradicate racist and ableist media. Jen’s mission, in her words, is to reimagine “Mothering as an act of Resistance”, redesigning ableist visual culture by “encouraging communities to engage in conversations about acceptance, rooted in how Black Neurodivergent children are valued and seen.”
Tune in as Jen shares:
- how Knox was diagnosed with autism — and how his family views his disorder as natural, and embraces his needs
- how Jen and her husband have been sure to monitor Knox’s needs and environments so he can thrive
- how Jen created the first zine to support Knox — as a fun guidebook for his teachers
- that Jen has sought Black joy in autism, and uses design to demonstrate it
- how she supports her neurodivergent students at Bowie State University
- how she has created structures to support Knox and accommodate his needs
- how Knox’s Blackness intersects with his disability from a healthcare and human perspective
- a discussion of the injustice of racial discrimination and inherent bias — and why Jen has intentionally created a safe space for Black disabled individuals and caregivers to occupy
- how Jen works with her community to keep Knox safe as a Black autistic child
- why she has Knox registered with the local police in her area
- how she was diagnosed with Graves’ disease at 21, and was given radioactive iodine treatment to effectively “kill off” her thyroid
- how little guidance she was given for her long-term health after her own diagnosis
- that art is a form of self-care for her — and for Knox
- what intersectional allyship really looks like
- how she plans to work toward an official diagnosis of ADHD
- where you can get your free printable #BDLM images, and how her design has swept the world in community protest
Lauren: Okay, guys, thank you so much for joining us. I am here today with Jen White-Johnson. You may know her because she's the artist who's behind the Black Disabled Lives Matter symbol, the fist with the infinity symbol up there. She's got a son, Knox, who is neurodiverse. And she herself has survived Graves’ disease. So we're going to talk about all of that, especially in the context of what's going on in the world right now, since the murder of George Floyd. Jen, thank you so much for joining us today.
Jen: Well, thank you.
Lauren: It's such an honor to be giving you another platform to share this story because it's amazing what you're able to share on social media, and I'm excited to hear more directly from you. I'd love us to start from the very beginning and talk about Knox, and find out when and how you first realized that he might be presenting as neurodiverse, and what steps you've taken to empower him in his ongoing health.
Jen: So, he was born premature; he was two pounds 15 ounces. So he was already very small and very delicate and fragile. And so we were really just focusing, my husband and I, on our first chapter — just parenting and making sure that he was okay, he was thriving. And at around 2, he was in daycare and his assistants were noticing certain traits and signs that they normally associate with a kid who's autistic. And, of course, that was very new to us in terms of what to even look for, or if we should even be concerned.
Because cognitively and developmentally he had his own strides and he was basically forming on his own terms.
And so, some of the things that they noticed were that he kept to himself and he enjoyed playing on his own. And we were thinking, yeah, okay, you just kind of like to do things on your own. And it's always interesting to see what are some of the traits that they consider to be not normal or not typical? Because as we get into it, I'll tell you that he's completely cool, and he's a normal 7-year-old doing a lot of the things that your neurotypical individuals and kids would normally do at that age. But of course, the scary signs are that they're not focusing and there's not a lot of physical connections; they’re lacking empathy, and of course, not a lot of eye contact. And then he just wasn't very social. We thought he was, but obviously as I've continued to get familiar with autistic advocacy and realizing that these traits can sometimes be viewed as detrimental … not for us as a family, but they often call it the risk factors in getting your child diagnosed. And of course, we were concerned and we were worried, thinking, oh, my goodness, oh, my goodness, he's going to be plagued for the rest of his life. Because that's kind of how they shape it for parents to view neurodiverse kids. So naturally, our first reaction was, oh my goodness, should we get him tested? Should we get him speech therapy? Should we have him assimilate and adapt to societal norms? So naturally, that's like how we felt that we needed to … get him fixed.
Lauren: It’s interesting you use that word ‘fixed’, because so much of the language around autism and the spectrum of autism is really detrimental to these kids, too, isn't it?
Jen: It is, and that’s what I consider very able-ist language, language that is basically very abusive. Even if my son was non-verbal, he had other ways of being able to communicate. And he was full of emotion and full of joy and full of happiness and full of empathy. But he just had his own way of showing that about himself. We did want for him to be able to get services. And we did want for him to be able to feel like, hey, I can be a 3-year-old that can have friends and can play and enjoy normal 3-year old activities. And when I say normal, I just mean what society places as normal. Because he had his own ways of having fun. Whether it was stacking his toys in a full beautiful spectrum, and stacking his shoes and his blocks by color. We thought that was amazing. We weren't necessarily, like, Oh my goodness, you need to shift and change the way that you play because this is just not normal, this is not what other kids do. We really appreciated watching him just grow and develop.
Lauren: Yeah, absolutely. And as we're going to get into in this discussion, so much of what society teaches us to do, so much of how we learn to behave in society, is actually very broken. The concept of autism in the midst of what we're going through right now, historically, is also kind of an interesting one, isn't it? Because this is something that, using words like ‘normal’, using words like ‘typical’ … the concept of ‘fixing’ your kid, when your kid is perfectly healthy and just doing his thing and he's very individual, like everyone else.
Jen: Exactly. We had a lot of lessons to learn. And obviously, especially within the Black community, it’s automatically expected that, okay, well, this isn't necessarily a “label" that we want for our child. Sometimes in the Black community, there's this essence of … not my child, and I don't want for my child to be viewed in a different way. I want for them to be able to adapt and to assimilate. Because there are certain expectations.
You already know what your kid is up against. So you don't want for there to be any more challenges or problems that are going to get them put into this box.
Lauren: To keep them behind, really, when they want to flourish.
Jen: Right. And so I spent a few months or so getting him into appropriate services and getting him a part of a really cool community where he could be with other kids who were autistic and who were autistic on the full spectrum. Whether they were speaking or non-speaking, whether they were older or younger. And then also being around supportive adults who could help create this really beautiful environment where he could just be himself. So he was at this really beautiful center for about two-and-a-half, three years. He continued to feel comfortable communicating in a variety of ways. And it really helped to prep him so that when he transitioned into a public school atmosphere, he felt, like, okay, I can do this and I'm ready to be able to just kind of hang out and sit in a classroom and learn.
Lauren: Be himself.
Jen: To be himself, to learn. And he came with so many really beautiful attributes in terms of his learning style. And it was really important for us to meet with all of his teachers beforehand to say, “Hey, this is our kid. He's autistic, but we don't necessarily view that as an illness. And neither should you as his teacher.” And we made a cool little booklet, a little zine.
Lauren: I was gonna ask about the zine! This is perfect timing. Please tell us about the zine you created.
Jen: Well, there's two. The first one …
Lauren: This was also something that got you very well known in the autism community for. And what a gift that you're an artist and you have a son who's expressing himself in varied ways creatively, and you're able to support that with him as well.
Jen: So basically with the zine, again, it was like our love letter. My husband is a writer, and I'm a designer and a photographer. And also I write a little bit, getting better, trying to experiment more and be more comfortable with how I write about activism, how I write about disability. We had been seeing so many complaints and negativity, especially from parents online, and I felt like I really didn't have a resource at that time. Where I saw advocates and parents amplifying their autistic kids. And it was really concerning to me. I was, like, I don't see enough joy. And I'm not necessarily talking about just wanting to see all the the sugar-coated, superficial happiness. I wasn't really talking about that. I was really talking about: This is our kid and we love him just as he is. And this is something really cool and exciting that we learned from him today. Just really didn't see a lot of that. I'm sure there was a lot of it out there. But because obviously, if I'm entering into this journey for the first time, and if I'm looking for resources, I'm gonna be, like, okay, so who's talking about it? What are some groups?
Lauren: Also, you're already so busy just raising a little kid, to have to be going down the rabbit hole of resources as well … unless someone can hand you the right resource, that's really challenging.
Jen: Exactly. And so naturally, the resource that is first handed to you is Autism Speaks’ 100 Day Kit.
Lauren: And they've got their own controversial approach. I think a lot of families who have autism in the family … those resources can be questionable.
Jen: Of course, yeah. And so I knew early on that if these materials weren't written by Black indigenous people of color who are autistic, who are from that community, then I’m, like, well, it doesn't really represent my autism experience for my family. So I learned about the Color of Autism.
And I learned about a lot of other spaces of Black voices that were already really helping to amplify the autistic community...
...specifically in terms of, ‘Hey, this is who we are; these are the resources that we can provide. And these are the topics that we talk about.’ Because I was very careful; there’s a million support groups out there. But I'm not necessarily here to be, like, ‘Oh, my kid did this. And my kid did that. And we just cried all day for five hours.’ It's important for those parents to feel like they have an outlet. But what is that doing to help your autistic kid? Where is the bond in that? And I'm not saying that every single moment was always happy. And that it was easy — because I'm a first-time mother, so naturally it’s going to be challenging. But I really wanted to use design and to use this new chapter in my artistic expression to create something that I thought could help amplify — not just my son — but could help amplify the movement.
Lauren: And be representative of your experience, as you say.
Jen: Exactly. And, then I'm also specifically talking about representation … this is what a Black neurodivergent family looks like when they focus on joy. And when they focus on acceptance. It was really important that that was clear and true in terms of what was presented in the zine. And so I was able to connect with these really amazing publishers, Homie House Press; they publish a lot of underrepresented voices — queer folks, trans folks. Making sure that those communities are heard and given the representation that they deserve. And being able to collaborate with folks that are underground, like skeleton bones crew, that everything is going to be completely dirty and not glitzy. When I say photozine, it's no sponsors, no nothing. It's just you, underground, investing your time and blood.
Lauren: And it's a project that comes straight from the heart when it's built like that.
Jen: Exactly. Plus the way that it's distributed, it’s on our own terms. We could take it to book fairs, we could take it to community gatherings, and it can be a part of lending libraries. And that's where it is; it’s archived in the special collections at The Met, at the Maryland Institute College of Art where I went to grad school, in their lending library. And a lot of educators have said, “Hey, can we use it as a resource as we're talking about Black narrative in my photojournalism class?”
So it's been really beautiful to see it used as a tool to help educate and amplify. That was beyond what I even expected.
And I was, like, yes! This is why this needed to be made.
Lauren: It’s so beautiful. And that's also something that you were saying, that you were able to put that together and hand it to Knox's teachers as well and be, like, this is who we are.
Jen: Yeah. And then it ended up becoming smaller little zines that can grow with him. This one, the Knoxs Rocks zine, was basically imagery and thoughts from when he was first diagnosed at two, to five years old, how he continued to evolve and become with his amazing autistic self. And then this is a smaller zine, Hi, My Name is Kevin, which was a collection of … this is me now that I'm about to enter into first grade … and when you open it up, it has a list of all of his teachers’ names, and all of the things that he had done over the summertime, things that he loves, things that can help explain a little bit about him. There’s a photo of him when he was born, and then at six years old. And then, when you open it up, there's a whole letter.
Lauren: So it unfolds, which is amazing. Oh, wow. And there's a letter. So what Jen is showing me is basically the zine; it opens up and shows these pictures and things that he did over the summer, as you mentioned. And then when you fully open it up, when you unfold it, there's a letter on the back. And who's that letter for?
Jen: So, this letter is to anyone that he is going to be coming in contact with. Whether it's his special educator, his speech pathologist, his occupational therapist, his assistant principal, the counselor, the vice principal. We gave it to everyone on staff at the school, as a way to say, “Look, we're extremely happy for this upcoming school year. And we want to take this opportunity to say that we appreciate everything that you're doing as educators. These are the things that you need to know about our kid. This is why our kid rocks, and why this first-grade year experience shouldn't necessarily be about changing him or making him abide to the rules.” Or, “Yes, he's in school to be able to enjoy the learning experience, but he has his own learning style.” And it talks a little bit about his history, about when he was diagnosed, what his first friendship experiences were when he was getting his early services. And it talks a little bit about the things that are offensive. We don't view autism as an illness that needs to be cured. It's a really beautiful brain difference.
Lauren: It’s a condition. This is the other thing, that you're here sitting talking to me on a podcast about invisible illness. But what I love about this conversation is that, as you're saying, this is not an illness, this is a condition, but it's one that you can't see from the outside. You can't see by looking at him that he may need special forms of communication and he may express himself differently.
Jen: And it's a full spectrum. There’s not just one specific aspect of an autistic person. They’re all unique, and that's a really amazing thing about it. I have students, because I'm also a professor, so I've had an influx of autistic students within the past year or so. And they have a lot of really interesting traits.
They’re impulsive, and they're so excited about everything. And they want to be able to accomplish so much.
And then there's also the aspect of anxiety … “Well, you know, like, if I'm not good enough to do this, then what do I do to get there? And if I'm starting a new class, is this teacher gonna like me? Am I gonna like them? Am I gonna be able to do well in my class? Are they going to be able to fulfill the accommodations that I need?” I have one student that’s always super ready to get out there. And then I have another student that's a little bit more hesitant in terms of … yeah, I'm not sure if I want to make that decision. So I mean, there's different personalities in terms of adventures that they want to be able to take, and obviously, they have to be comfortable. And I'm just there to be an advocate. I'm there to make sure that they have what they need and to be their cheerleader in terms of ‘you can do it’, because I'm specifically talking about artists.
Lauren: It's interesting, too, because you use this word ‘cheerleader’. And I think one of the things that comes up in a lot of these discussions, is when you have a disability or some kind of condition that needs to be flagged with a professor in college … It's always college when people end up getting burned out or get sick if they're going to get sick. And a lot of students struggle to express to their professors, “Hey, I need this accommodation … or that accommodation.” Or, “I may communicate in this way … or that way.” And the fact that you're already an advocate, and understanding and working to further expand almost your vocabulary and understanding of conditions like autism, means that these kids already have a leg-up when they come to you. No wonder you're getting more autistic students —because they know that you get it. It's wonderful. How has that advocacy work, do you think, also impacted your relationship with Knox? Is that something that’s grown with him and grown with your relationship with him?
Jen: Yeah. Because the minute that I meet them, I tell them, “Look, I come from a neurodivergent family myself. I have undiagnosed ADHD. And I have an autistic son.” And instantly they’re, like, “Oh, my goodness, so you understand my world, you understand where I'm coming from, you understand the accommodations that I need.” Because I'm always just there to listen. I have autistic students that are Black, white, Latino, from all different nationalities and cultural backgrounds and cultural identities. So it's always really cool to be able to get a sense of, “Okay, so how was it growing up in your family?” And I'm able to get a sense of … did they grow up in a supportive environment that amplified their identity? Or did they grow up in an environment where they weren't necessarily encouraged to even say, “Hey, I'm autistic.” Did they spend the majority of their lives masking? And I've seen the different elements of when it's a white student versus a Black student … how the conversation shifts and changes, how the grades are different, how the opportunities are different that are presented to them, and what kind of accommodations are being made. So I've seen racial bias in terms of, if they're on the spectrum, what color they are. I've seen firsthand how the experiences can be different. And also, it's not always easy as a Black autistic student to necessarily say, “Oh, I am an autistic person.” Because there's the stigma that's associated with that; there's the stigma of “Oh man, my professors are not going to take me seriously. They’re not going to want to work as closely with me. They're not going to provide these types of accommodations.” And most of my students, they're very vocal. They don't just sit and wait. They’ll be emailing people at the drop of a hat saying, “I need this, I need that, this is my situation.”
But they're not always necessarily ready to say, “Oh, I'm autistic. These are the accommodations that I need.”
Because they've been so used to masking and expecting, sometimes, for the professor to be welcoming. Because usually with most schools, how they work is, if there's a Disability Support Services Office, it's the job of the university and that support system to send accommodation letters out to faculty. But the student needs to be able to have a diagnosis of whatever neurodivergent disorder or condition or difference that they have. But if the student and if the family hasn't connected with those offices to let that particular office know, then there's really no way for professors to feel like they even owe the student any type of accommodation at all.
Lauren: And is that something you're also seeing, disparate experiences, again, between the white students and the students of color as well?
Lauren: So it's something that sounds like there's more fear of retribution if you're a student of color or a person of color who's living with a condition like autism, because there's additional stigma piled up on top of you. And it's not just about the way that you present as a person of color — be that, as you say, Latino or Black — but that you're also adding on top of that … there might be something neurodivergent here, there could be something extra that I need. And this fear that you'll be perceived very differently and treated very differently.
Jen: Oh, yeah. And this is something that I've heard firsthand because I have them all together in my group of classes, and it's usually these strapping young Black men who either have ADHD or who are autistic, that say, “I’ve been bullied, I was bullied in high school.” And they have these amazing gifts, whether they're into hip hop and they're into voice acting or whether they illustrate, they're really amazing and I’m, like, “Yo, you don't have anything to worry about in terms of your craft as long as you have the right people in your circle. There's this, this, this and this and this resource.” But they need that additional support from their home environment and then from the community that they're around, to say, “Yes, you can do this, you can push this.” So, again, it really just depends on their environment. And so my job is really to help foster that community, to let them know that they have a community. And even if they don't necessarily have it at the university that they attend, here are a million different opportunities and communities that you can be a part of, if you want it.
Lauren: You're really empowering them with information and empowering them to speak up when they need to. And what about with Knox as well? It's interesting, because you have the secondary zine that you were talking about, and we were discussing, with the letter on the back. So is that something that he also carries around with him that he can hand out to people and he gives to the community?
Jen: That’s the goal. It was an experiment because we were, "Okay, well, let's just try it out with your first-year experience, your first grade experience.” And we were literally just in his first grade class the day before school started in first grade, last September, and we were, like, “All right, so here's this letter.” And we had him read everything in the zine, and we had copies for everybody. We didn't give copies out to the classmates; the teacher had a special chat about autism, and behavioral differences and brain differences, and basically understanding that we have this cool kid in the class who has a really cool, different identity that he lives by.
But he's also a friend. And he's happy, and he loves My Little Pony. He loves Sesame Street, and he loves everything that you love.
And I was concerned. There was one class session where they had to bring a book to class, and they had to research it and talk about the beginning, middle and end, and they had to dress up like a character in the book.
Lauren: That sounds really fun. I'd love to do the project!
Jen: He was a My Little Pony brony all the way. And we were, like, “Yes, so cool!” I was in love with it. And he had his Rainbow Dash little jacket with a little frilly unicorn top. And I contacted his teacher and said, “Just so you know, he's gonna come to class with this My Little Pony jacket, and in case there are any snickers and laughs in the classroom, we're not going to stand for it. I am just letting you know now that I will be in class that day when he gives his presentation.” And I was sitting in the back of the class and I was documenting it safely, only focusing on him so that I could have that memory. And he got up and presented the book and she was, like, “Don't worry, he's safe. This is a safe space.” And that was really important, because how many of those safe spaces are in schools, that are going to continue to be in schools. Not just on the elementary school level, but middle school, high school, the university setting.
Lauren: Well, and as services become less and less available, too, public services that can support him.
Jen: Yeah. Right. And that's why it's so important to start assembling with a really supportive community. We just need to continue to see more. And that’s something that the autistic community is really thriving at in terms of the advocates, the activists that are out there, making sure that community is there. And Autistic Twitter, they're just amazing what they do and how they rally for each other, and how they support each other, and how they call each other out, and they're able to be honest with each other, really raw and to share resources.
Lauren: So your son has that to grow into as well.
Jen: Exactly. And that's what I remind them … I’m looking to y'all … you guys are the ambassadors; you guys represent the moment now. How far the autistic community has come in terms of being comfortable with self-advocacy and encouraging people not to mask, encouraging people to accept every unique aspect about them, whether it's stimming and safe stims and moving in a variety of really cool ways, communicating in a variety of cool ways — whether it's through art, whether it's through writing, blogging. And so it's been really beautiful familiarizing myself and really leaning on that community. I tell them, “You guys need to continue to be there for each other because that's what my son is going to be a part of. If every one of you is rallying for him and for people like him …”
Lauren: Then you can't lose. What about in terms of your relationship with your son? Do you think that all of this work that you're doing supporting him has deepened your relationship with him, and given you guys an opportunity to be even closer than you would have been maybe if he'd been a neurotypical kid and he didn't need the same kind of support?
Jen: I think that that we would have been close, regardless if he was autistic or not, because we're just a very tight knit group of family. I mean, we're Black. So it's gonna be nothing but honesty and rawness and full of joy and making sure that he's going to be alive.
Because, being Black means that your everyday is like a fight for your survival.
I'm not speaking out of my butt; this is true, clear fact. So whether he was disabled or not, we would have been tight. Definitely. Because he has this really unique identity. Yes, the bond will continue to grow because we're just trying to make sure that he's good and that he feels like, I'm fine.
Lauren: What does it mean right now, as well, to be the mother of a Black child, in terms of explaining what's going on right now? Have you had the talk with him yet … which, for those tuning in, it's not the birds and the bees talk. This is the talk about what to do when the cops show up, that Black families have to have every day. Have you had that talk with him?
Jen: Usually the talk happens when we're actually in the middle of the act of doing something that presents the situation. We were at a family reunion last year in Salisbury, Maryland, where the community is sometimes diverse, sometimes divided — basically on where you go. Or if you do go to a certain space, you’ll see specific communities that are just divided. So you'll see these families over in this corner, and those families over in that corner. But with Knox, if he sees kids that are full of energy and full of life, he wants to be around that vibrancy and that energy. And he's not necessarily aware of the environment. Because he just wants to be able to say, “Hey, I want to connect, I want to be friends. Because I want to show everybody that I'm super cool and amazing.” And because he is such a people person, and he is very approachable, and again, people are, like, ‘What? But he's autistic. He's not supposed to be approachable and he's not supposed to be friendly and all these things.’
Lauren: That’s a preconceived idea, isn’t it. These stigmas and ideas that people have about autism that just aren't true.
Jen: Right. And so what hurts is seeing other people … and when I say people, I mean young kids that are middle school-aged, elementary school-aged … that are, like, ‘Who is this kid running up to us, so full of excitement, acting like he knows us?' They're not really ready for the level of excitement and exuberance that he brings. And that's what hurts the most. Because they're not, like, “Hey, you want to join us?” They’re, like, “Get away from me. I do not know you. Stop in your tracks." And those are the times where I have to talk to him, and I have to remember … the first thing they’re seeing is this Black kid that’s running up … And he's small now, right?
Lauren: But what happens when he's an adult, yeah. A teenager.
Jen: Yeah, and when he's gonna approach some kids playing in a park. And it may be a group of mixed race kids that are just chilling and doing their thing, and he's gonna want to be, like, “Yo, can I get a game? What's up?” Or however he chooses to express it. And they may not necessarily even be ready to embrace him. So, in this particular situation, the kids were playing kickball, and I had to help set the tone. I was, like, “Look, we're not some random crazy Black family. Whatever stereotypical thing you think about us, we’re outside, just like you are, playing, enjoying life and enjoying the summer. We're here at a family reunion. This is my son. He's seven. And he wants to play kickball with you guys. Is that cool?" So I had to help set the tone for those kids, to say, ‘Hey, this is an open space where everyone's welcome. You should expect that there are going to be all different types of people, from all different walks of life, within this space that we share, that is not owned by you. So the least that you can do is welcome a kid, a Black kid who just wants to play, as simple as that.’ And so when I help to set the tone, they’re, like, “Cool, he can play with us.” And I was, like, "Thank you, I really appreciate it. Can you guys explain and break down the concepts of the game and stuff — because he just wants to be a part of a team.” And so he played with them for a little while, and I'm glad that there was an older kid there, probably like 11 or 12, who was really receptive. And it was a group of white kids. I was just really happy that they were like, “Sure, yeah.”
Lauren: But that's also just a small example of where you're stepping in and advocating for him, but it's got to come with a lot of fear in a lot of public situations, too, right … given what we know about what's happening to Black boys and Black bodies right now, too.
Jen: Yeah, yeah, yeah, it definitely comes with fear. Because, like I said, Knox is very giving.
He's a very embracing person. There is no malice.
Lauren: He’s just a joyful, loving, happy kid.
Jen: Yeah. Now that he’s seven, he's defiant in his funny little ways. Being, like, “No, I don't want to do this.” And we’re, like, “Okay.”
Lauren: All right, we'll pivot.
Jen: A lot of the time, I’m, like, “Yes! Tell me you don't want to do it.” Because it's cool to just see him express that. So yeah, it's definitely something that we think about all the time. And especially as artists, we love to be outside and we love to be in museums, and I always have my camera with me documenting different experiences — especially documenting him in different spaces. I'm a Black woman, I don't think I look very scary. I'm approachable. But then I’m also aware.
Lauren: But you're also aware of how you don't think you look scary, but unfortunately, powers that be …
Jen: Right, but I also speak with my hands. I speak with my face and I have expressive eyes, and I'm very emotional. And I get very expressive when it comes to how I express my passions. So someone could easily twist that and view this bold soul as a threat. And it's difficult that I would even have to walk around thinking about that. I was talking to my husband the other day, and we were looking at footage of Black people just existing and being in spaces and just doing whatever they want to do, and they're getting approached by a variety of people questioning and calling out why they're existing in these spaces.
Lauren: Your reaction is right. It is laughable, this kind of fear and prejudice reaction from people is totally laughable to anyone who has an understanding of humanity, right. But it’s scary, too.
Jen: Yeah, and that's the thing. It makes perfect sense because we're viewed as a threat — before we’re viewed as human, as people. And imagine how an autistic person would feel in that moment, who has their own ways of expressing themselves, a Black woman who has her own ways of just existing in a space — and having people feel threatened by that.
It’s unjust. Which is why we need to continue to create safe spaces.
Lauren: Absolutely. Which starts with all this communicating that you're doing by creating zines, by advocating on Twitter and elsewhere, so that people can gain an appreciation for what you guys go through day to day. I'm also curious because, we talked about this before we started the interview, that there's that image that's resurfaced of a family's lawn, and you can see that they've put up signs on the lawn and on the garage door … “I have an adult son who's autistic.” So if the cops come in… “He doesn't understand. So please be patient, please don't shoot.” What goes through your mind and heart when you see images like that … Black families are having to defend themselves with signs on their lawn to the cops, “Please don't hurt my son who's doing nothing.” What is that experience like for you?
Jen: It's difficult … and I've been having this conversation with a lot of other … because there have been already countless talks and virtual meetups about being Black and autistic and what that means. What do we do when we are approached by the police, and what do we tell our kids, and who's there to de-escalate the situation? Who should be there to respond? And thinking of Stephon Watts from Illinois, 15 years old, autistic young male, who had a supportive family, abused by the criminal justice system. When the police are called when there is an autistic kid that is exhibiting trauma, anxiety, the first responder … should that be a police officer? No. A caretaker, someone who understands an autistic body and autistic Black body. What that means. Because not all police are going to walk into the situation with the adequate training and the adequate knowledge. And depending on funding that is in place for that particular community, is it the cops that are responsive to that community? Do they even know the community? Do they know that on 57 whatever Avenue … we know that Kevin Johnson lives on this block and we know that he's registered within our district and the cops around this area, the law enforcement folks in this area are familiar with the Johnson family. It's really up to us as a community to say, “Hey, we know our community." My grandfather was a Chicago city police officer and he knew the beat; people knew his name, he knew family's names, they knew each other's kids, they knew so-and-so who lived down the street. They knew that if so-and-so didn't come home from school that one day, they knew which family to get in contact with to let them know. They looked out for each other.
Lauren: It was more of a community experience in generations past than it is now.
Jen: Yeah, and the fact that that just doesn't exist, or doesn't exist a lot. Or the consistent existence of it doesn't exist a lot within neighborhoods where there is an individual who has a particular behavioral identity difference or disability.
Everyone, I feel, should rally behind those folks who are the most at risk and who are going to be targeted the most.
So, I wouldn’t necessarily have to ask, okay, so what was her experience, and in the past? That particular family, who's looking out for them? What kind of services do they have like? Do the neighbors know that family has an autistic kid who is aggressive?
Lauren: But this is something you can do by actually reaching out to your community, so that you don't have to find yourselves in that situation hopefully.
Jen: Yeah, because I want to be able to know that if something is happening to my son, the neighbors are going to be, like, something isn't right. That doesn’t look legit. But obviously if they see a squad car there, they're not gonna question; they're automatically thinking … well, the cops are there because they're supposed to be there, right.
Lauren: Unfortunately, that’s often the prevailing wisdom.
Jen: So Black families, and this is me talking with other Black moms who have autistic kids … they have their kids registered with the various police district spaces within their communities to make sure that if we're gonna be contacting someone, they're already in full knowledge of what my child is at least about, and what challenges he does have, and that he should be handled with the utmost respect and care — and not abuse and not violence. But again, cops are coming into the situation with … this person is a threat, my life could end today. So naturally, they're already coming into the situation on defense mode.
Lauren: And triggered.
Jen: Right. It's defense mode, and it's not: Let me save this person.
Lauren: It’s really interesting that the stance you've taken is to actually go into the psyche of a cop and try to understand it from their perspective — which is exactly what Black families are asking cops to do. We’re asking cops to actually think first, and think about other people's situations and bring some humanity to their treatment of other people. So you're responding to a lack of humanity with all of the humanity that you can, which I think is a really beautiful response. We haven't really touched too much on your Graves’ disease. I want to quickly touch on that as well. You told me via email that you treated it with radioactive iodine. But was this all before your pregnancy; was this earlier on? Can you tell us a little bit about that?
Jen: So this was in my early 20s, when I started noticing some really weird skin lesions and reactions, and my body was just doing some really interesting things. I was breaking out in hives and of course, it's a genetic condition; my mom was hyper in terms of hyperthyroidism and Graves’ disease.
But it wasn't something that I ever thought that I was going to develop or that I was at risk of, because I was good until freshman year of college.
And then they're doing blood work and they’re, like, “You know, your blood levels are a little wonky.” But because I was still young, they were able to balance it out with a little bit of medication. And you can get various treatments where you do an uptake, and the thyroid is shrunken down a little bit and it's not completely gone. But later on, as I got older, and I had different hormonal changes and imbalances, that was when they were, like, “Your levels are super high, and we're going to have to completely burn this out of you.”
Lauren: Yeah, so that's what happens.
Jen: Yeah, so I didn't have to get the surgery. I just got the iodine treatment and I had to quarantine myself. And I was only 21.
Lauren: That’s really young, yeah.
Jen: Yeah, it was a really weird time. Now I'm taking a levothyroxine pill, which is a pill that helps to work like a hormone that your body really isn't producing.
Lauren: It produces the thyroid hormone. Exactly that.
Jen: But pregnancy can alter that. And you have to make sure that those levels are really perfect and on point to make sure that you can even have a thriving pregnancy. Because I was still young-ish when I had Knox, I was pretty much able to get all of those levels contained.
Lauren: But it's something that you were monitoring throughout the pregnancy, it sounds like.
Jen: It was something that I was monitoring, but making sure that you have the right doctor that basically understands … Most primary cares are, like, “Okay, this blood work shows these levels.” And then that's it, there's no guide in terms of nutrition to help sustain your body and what you can do to continue to feel like you're not as sluggish and you don't have as much fatigue. Because they don't even always tell you, “Oh, these are the side-effects of the medication."
Lauren: No, they don’t. They don't even tell you that with the Pill half the time!
Jen: Exactly. And the medication isn't enough.
Lauren: It's lifestyle management.
Jen: Yeah, you have to keep yourself healthy. You have to keep yourself well.
And you can't necessarily always dictate what your body is going to do.
Women and the way that we age and the way that our body shifts and changes is just, like … !
Lauren: I know, and our environments which are constantly barraging us with toxins. There's no wonder there has been such a rise in cases of autoimmune disease when our environment becomes more and more toxic surely. So that's interesting. You've had your own health experience. And then of course, you have Knox and he's having his own health experience. And I'm wondering between yours, and your experience as his advocate, whether you've been in situations where you've been confronted and forced to justify diagnoses to other people — because they're invisible. How have those situations looked when people have confronted you, to validate for them the existence of your diagnosis?
Jen: It's hard because folks are coming from all different perspectives and they have their own list of characteristics and attributes that they know … this is what autism looks like. Or, this is what an autoimmune disease looks like. And naturally, they're not really understanding and there are looks and statements and comments … “Well, you know, this is what you should be doing for your child. You should be getting them these kinds of services. And you should be taking these kinds of vitamins and steps.” It's just folks trying to give me their own specific types of diagnoses. And then also trying to put us in a box in terms of, “Well, this is what you should be doing.” Versus, “Well, this is what you need, to be able to just continue to be happy and to be joyful.”
Lauren: I love your approach to that, too, because everything that you do, especially with Knox, is about finding joy in being outside the box … that's the lesson that you're bringing to people. So I love that you're talking about that, because I think so many of us … we're small-minded. And I've been this person, too. And I'm sure I will be this person in the future, where our only way to understand something is to put it in a box that makes sense to us, right? And so it's about expanding those boxes, or obliterating them entirely, and looking more at individuals, isn't it?
Jen: Completely. And I know what it's like to live in this real dark pit where I’m, like, “Well, I'm just gonna be sad because that's just the only way to make sense of it.” Basically not allowing myself to be happy or not allowing myself to be in a place of freedom, of liberation. And so that's what the art does. A lot of people are, like, “Well, what do you do for self-care? And how are you managing it all?”
And I’m, like, “Well, art is really what I use as care.”
Lauren: And you're teaching Knox to do the same, which is really amazing.
Jen: Yeah. Because I feel like … making stuff in a silo, and making all this artwork just to have it for myself. And be, like, well, I made it. And it's just for me; I'm just gonna keep it here and say that I made this cool thing to express. But I'm like … well, but I'm not by myself. I'm not alone. And for a while, I was, like, I'll make this zine just for other autistic families, other Black autistic families. And it can have some impact, sure. But the minute that I decided to really let myself go and see how it could be used as a really helpful tool…
Lauren: … how much bigger your box could become.
Jen: Yeah, exactly. How the box can evolve into …
Lauren: … into a sphere, or a triangle, or whatever shape, right?!
Jen: Exactly, full of different perspectives, full of dialogue and communities and relationships. And so once I accepted and once I understood that it was so much bigger than just a book about my son, that's when it really took, like you said, a different shape and a different form. And that's really what this whole experience is about — transformation. I don't want to be the same person. And I look back at the things that I wrote in the zine or even the things that I wrote on my website when I was sharing the zine, and I’m, like, man, I don't even express myself the same way. I don't talk about autism in the same way. And I shouldn’t. I should continue to experience, research, to listen more…
Lauren: To evolve.
Jen: To evolve, to make sure that I’m understanding how the conversation is changing, especially when it comes to Black and autistics and what they're going through, and what they need to continue to be empowered by.
The conversation needs to continue to shift and broaden completely.
Lauren: I think that's beautifully said. You also mentioned, between Knox's experiences and the experiences of some of your students as well, particularly your Black students, and other students of color, I'm interested to know about your experience of medical bias. Have you experienced prejudice or privilege in the medical system because of the way you present, because you're a Black family? Can you see your circumstances maybe having been different in terms of the services that are readily available to Knox, and even to you in treating your Graves’ disease and everything, if you'd shown up and been a white family?
Jen: Well, Black and Latino kids are not likely to be diagnosed as quickly because of the lack of resources. Or just the availability of resources. And even official services, to just help to have your child to communicate just using words whether they're non-speaking or not. And so, I have families that will always ask me that same question … Well, where do I go? Who do I turn to? What kind of access is out there? Obviously there's the developmental pediatrician, there's the clinical access. But making sure that it’s right for your family.
Lauren: So not accepting the first answer if it's the wrong one also. It’s about pivoting if you need to, to protect your family. And that sounds like that's an awareness thing, but also, you're going to come across practitioners who may be actively racist or exhibit some form of bias and it’s also our job to see that and pivot when we see it, right?
Jen: Well, yeah, or who basically subject your kid to abusive therapies, and trying to make sure, again, that they adapt to the societal norms. And that their sensory experiences and the things that they latch onto may be different.
And that if my kid wants to stim in a really cool, unique way, then let him do it.
If they want to jump and if they want to sing, that they should be allowed to do that on their own terms if that's what makes them happy.
Lauren: This also means systemic change, doesn't it — the systems that are serving these kids and and families who have neurodivergent family members, the services that are serving you, from clinicians to social services and what have you — that these need to change systemically to support not just white families, but everyone.
Jen: Yeah. It’s a lot. And I feel like with Knox, there's not necessarily a reward system where it’s, like, “Well, if you do this, you'll get this.” And, “You can only get this if you do this … and this and this and this.” I don't know, I feel like that can just get a little out of control.
Lauren: Yeah. It makes access to services inaccessible when you create so many boundaries. Can you talk to us also a little bit more about the development of your Black Disabled Lives Matter symbol, the fist that you created?
Jen: So, a lot of that really arose from, again, making sure that I was in full alignment with having amazing relationships and conversations with a lot of disabled activists. Listening to their perspectives, listening to their stories, feeling more comfortable about my own disability. Accepting those aspects … because, like you said, certain aspects of what my disability entails is invisible; a lot of it is hormonal and it's related to fatigue and energy. It's easier to be labeled, ‘Well, you're just weird and you're crazy and you're just a procrastinator and you just need to get it together. Things that are really abusive.
And so, I knew that there needed to be an artistic reaction that could help amplify everything that everybody's going through.
Amplify disabled Black people being completely brutalized by society, by police … a system that is working against them, but then also making sure that the artistic response could be something that could also empower community. Because the Black Disabled Lives Matter hashtag, that’s not something that I created. Various disabled Black folk within the community have used that hashtag on a variety of posters and artwork within the past couple of years, realizing how language can have power and the ability to help activate social change. So I took just those words and I knew that they needed to be used in a heavy, bold way to continue to ramp up visibility of this community that is oftentimes being erased. Because you can't talk about Black Lives Matter …
Lauren: …without being intersectional.
Jen: Without talking about Black disabled folks, Black trans folks, Black women, Black men. You need to be able to understand how unique we all are, how amazing we are, and that we're dealing with a variety of different situations. A lot of people forget that anxiety is a disability, depression, emotional disabilities, autism, lead poisoning …
Lauren: Autoimmune conditions, yeah.
Jen: All of these things that a lot of these folks have been affected by, whether it's been a detriment to their development or people have made it a detriment to say, ‘Well because you're autistic, or because you have epilepsy, we're gonna make your life hard and we’re gonna make you feel like you're less than, and we're just gonna put you over in this corner. Because you have developmental disabilities, you have cognitive disabilities, so we're going to leave you in a separate area, and we're going to make you feel separate, and we're gonna have you working with these people who aren't necessarily going to be advocating for you in the best way. Because we just want you to conform.’ So, everything that I've been seeing within the past three weeks, within my own life, within the various uprisings, I knew that there needed to be some sort of artistic response. And again, there were many artists who were using the words, the hashtag to create a variety of really beautiful, artistic responses. And because that's the language that I speak, and the language that I felt comfortable communicating with, to help amplify my community. The folks who I want to save, the folks who are the future … that’s where this whole piece of cake came into play. The Black power fist is used as a symbol that amplifies resistance and nonconformity and power. And, like I said, resistance and being able to say, “Hey, we're gonna fight everything that is against us by any means necessary." And so making sure that the disability community feels seen within the symbol calls for … okay, well, what are some symbols that can help to make sure that all of these various disabilities can coexist? Because we all, like you said, intersect, and we’re all with each other and we should be rooting for each other and should be amplifying each other because we're all different and unique. But we all are disabled. So, with ADHD, and autistic folks, I knew the infinity symbol would definitely help to tie Black disability and resistance and activism and protest. And so it was really an experimentation that I was using to say, ‘Hey, this is how I'm responding to everything that's happening. And I want to make sure that the community is being amplified as a part of this conversation.’ Because people were like, ‘Half of people who are arrested are folks with disabilities?!’ And, ‘What percentage of that Black community and how many people …’ And I was reading all of these various articles and all of these stats...
…half of folks with disabilities will be arrested by the time they’re 28.
Lauren: It's shocking. We're already dealing with shocking news, and this is an additional shock to the system and one that we need to be aware of in order to change things systemically,
Jen: And this includes folks that are just going out for a walk, just existing in their everyday neighborhoods just trying to do their thing. And that includes my son. And if he chose to respond in his own way to a situation, if he was with a group of his friends, would he be let go with a warning? Or are they going to take him in because he said something. And I'm not even gonna say be defiant or non-compliant, but he just chose to respond, because he's unarmed. And because he's just hanging out.
Lauren: I love that you're thinking about your son's future in this, that you're thinking about the future of the entire Black community with a symbol like this, too. And that infinity symbol says at all, really, because it's not just connected to neurodivergent behavior, it's also connected to this continuity you're talking about. Even this concept of resistance and response. But wrapped up with the joy and the sorrow of the experience, fully embodying an experience really.
Jen: Yeah. And I know a lot of folks were focused on portraits of the folks who have been murdered. And I did a few.
Lauren: I mean, those are also important. We're not saying they're not.
Jen: Yeah, and I felt like I wanted to use my artistic voice to be able to play with digital collage, and to tribute so many different activists, or tribute Breanna Taylor and George Floyd. It's up to us as a community to keep their memory alive. And then also to have this symbol that can help rally so many voices, and can bring visibility. Because there have been so many disability activists who already have such a really amazing thought-provoking platform where they use their words to amplify so much information that is constantly being erased from the headlines. And so it's been awesome to be able to see the symbol being used by voices who always need to be at the forefront. So, folks that want to interview us … and if they're going to go to so-and-so Congressperson that maybe doesn't have a disability, but that represents the constituents of a community … but if you're not disabled, you're not necessarily going to be able to speak for us. So you need to be speaking to an actual disabled individual that has first-hand experience.
Lauren: Yeah. And that representative experience as well. Absolutely. And we're very grateful to you for putting the work into making that symbol. It's wonderful to be able to share the artwork of individuals like you, to be able to also continue to amplify your experiences. So thank you for giving us all that gift. If you guys don't know about the symbol, I'll post it in my stories so everyone can see … but it's really beautiful, and something that we should all be embracing. We're sliding into the tail end of the interview here, and I like to wrap up with a couple of Top Three lists. I wondered if you could give me your top three tips for someone who … maybe they suspect something's off with them, or their child is maybe having some behavioral differences. What would you recommend either for parents of a neurodivergent child, or for someone who's going through their own health experience? What top three pieces of advice would you give people who are heading into this world of invisibility and needing to understand themselves better?
Jen: I would just really recommend doing your research … researching what actual representatives are saying, not necessarily just doctors or clinicians, but researching what other disability advocates or activists are saying. That’s where I've gotten the majority of my support, from just really familiarizing myself with folks who've experienced … whether it's been bigotry or whether it's just been clear, flat-out racism … by making sure that I understand their experiences. Or who've had to really mask their disabilities. Just reading and listening to what they say.
It’s really beautiful to see someone who's raw and honest, because that, to me, is like a form of education.
So I've spent a lot of time reading, and really being observant of that community. And I've learned so much.
Lauren: I love that. So number one is, do your research and seek resources that are direct from experience. What else would you recommend?
Jen: So, once you've done the research, it’s, like, okay, well, how is this going to impact my own disability? What am I going to do now with everything that I've absorbed and read, and the diagnoses of whatever I've received … now how am I going to live with it? Am I going to mask it, am I going to try to hide it? Am I going to try to keep it under wraps, because I don't want to be stigmatized by it? Or am I going to embrace it and be a part of community? And that leads me to the third one … there’s three, right?
Lauren: Yes, you get three. So, start questioning your situation, right. That's number two. And number three …
Jen: Number three is, find your community. Find the community of people that are like you, that are going to amplify you — not necessarily bash you or judge you. Or, a group for autistic people who want to be like neurotypical people, who no longer want to be autistic. That’s not a group for you.
Lauren: That’s a shame cycle. Let's avoid the shame.
Jen: Or this is a group for Black women who have ADHD, who want to be completely cured of it. No, I think I want to be able to understand how to manage it.
Lauren: And accept it.
Jen: And accept it. But then also feel like I can get together with other Black women, other women who are, like, “Well, this is some of the stuff that I do.” Or, “Here's a cool art project that I did.” Inspired by, or helping, because a lot of the artwork that I do helps me to understand the disability community. It helps to form all these relationships. And I'm learning. Meeting various disabled folks from the National Alliance of Multicultural Disabled Advocates (NAMD) and partnering up with them to commemorate the 30th anniversary of the Americans with Disabilities Act and meeting Black deaf people, Black blind people, Black wheelchair users. Becoming friends with them for the first time and realizing, okay, I've spent a lot of time advocating for my son. And I'm familiar with the folks who are in the autism community. Who are other people that I can seek out? What are other relationships that I can form with people who have different disabilities than mine.
But we still somewhat speak the same language because we're Black.
Lauren: Like finding that common ground, finding that thing that knits you together, right. And then understand the diversity of the experiences, it sounds like.
Jen: Yeah, and understand how as a community we can rally for change, and rally for amplification. And if we had the opportunity, the support and the funding, this is what we can make. If you just move out of our way and just let us, this is what we can do and what we can create. So it's finding the community, being a part of that community, and sticking with that community. And not, like, ‘Oh, I met you, okay, yeah, you're cool.’ And then just kind of trail off. Some people work better on their own and lots of people overwhelm them and lots of voices overwhelm them. And maybe if it's just you, and you're a part of a collective with one or two other people, and that's what you do and you make all this cool stuff, that’s awesome, too. As long as you find a community — whether it's 10, whether it's two people — that is going to be what really helps you. That’s what I really love that Crip Camp does, the Crip Camp virtual chats. That’s like a little fireside summer camp where you can hang out virtually and meet folks and listen and learn from disability activists, folks who have been rallying for decades that are our ancestors and our elders and that are helping to continue so much work and to help to inspire so many young, disabled Black folk, and folks of color. And it's really cool because on Sundays, they'll have conversations about everything disability — history, sex, all sorts of really heavy duty stuff that it’s okay for the disability community to talk about because we have the same conversations and we want to know what we need to do to be able to be there for each other. And then we have these little side chats, these little after-hour party rooms, where we can meet other folks and be a part of a cool little room where we can just talk a little bit about what we do.
Lauren: It’s so awesome. And it seems like that's really how you found a community to lean on, aside from the Twitter side of things and everything that you're involved with; having that outlet and being able to make those friends has been really meaningful for you. That's beautiful. All right, this is the last question and it's my favorite. I want to know — especially because you're someone who exudes a lot of joy and seems to seek joy in your varied experiences and to really spread that joy out to other people — what are the Top Three things that give you unbridled joy? Maybe you've made some lifestyle management changes, both for yourself with your diagnosis and for Knox as he's growing up, to work around his needs. These can be guilty pleasures, secret indulgences; they can be comfort activities, especially because you're an active advocate. What are the top three things that give you unbridled joy — and these can be things just for you, or they can be things maybe you share with Knox.
Jen: So, unbridled joy … of course, kisses and hugs and affection.
Lauren: I love that! That’s really sweet.
Jen: And the reason why I say that is because, now a lot of Black mothers aren't able to hug their kids, you know?
So, we just need to hold on to each other as much as possible.
Lauren: Yeah, thank you for saying that.
Jen: Yes, we need to hold on to each other as much as possible. And also with COVID-19 … I have a grandmother-in-law who's in Jersey and in a home and I can't have access to her. My grandmother is in Orlando; I can't have access to her now, and they're both 94 and so that hurts that I can't be there to hold on to them and hug them and just sit and be in their presence. The fact that I've been able to be home with my son … we had this very super busy schedule and I would commute two hours to work and I would see him late at night, come home and we would hug and cuddle together. And now it was like we went from these heavy, hectic schedules to COVID, where we're with each other 24 hours a day, which is all the time in the world, and you're able to completely just enjoy each other's presence and touch and smell all over again. And that means so much, especially since I had a very traumatic birthing experience. He was in an Isolette for almost two weeks before I could actually hold him. So that is what gives me unbridled joy, just the bond, the skin-to-skin, the holding.
Lauren: And the time, as well, to have that available.
Jen: Yeah. So that’s number one. And then number two, probably what brings me unbridled joy, is just rest and self-care. And being able to know when to slow down.
Lauren: What does self-care look like to you?
Jen: Self-care means making time to rest, making time to give myself more time to wake up in the morning and not roll out of bed and be, like, “I gotta go! I gotta go!” Just relaxing a bit more, just giving myself more brain time to ease my way out of bed.
Lauren: Totally with you there. Yeah, I'm not a morning person either. So we need a little more time. We ladies with the thyroid disorders. Just give us more time.
Jen: Right. Man, this struggle is real! So just resting. Because some of the things we can't always control, like chronic fatigue and what that feels like, can just hit us at any moment, because everything is imbalanced.
So we need to be able to fight for what our bodies want to do.
So, number two is self-care and rest. And then three is space. What gives me unbridled joy is my environment. If I'm cooped up for too long, or if I know that a simple change of scenery can help reset the tone, if I need a recharge, then going for a walk outside … just getting out, putting myself in a different space. That’s also a part of the ADHD, rearranging my room every five minutes, or switching things around, or never being fully satisfied with what a particular space looks like. So it brings me unbridled joy when I can just say … hey, I'm going to be here for this day … or, I'm going to be here for these few hours to help reset and to take a break from reality. So just changing my environment or reconfiguring my space.
Lauren: You probably love gallery spaces, too, I bet, because they're so changeable.
Jen: Oh, yeah.
Lauren: We didn't really touch on the ADHD, but I know that you mentioned that you're living with what is undiagnosed ADHD. Do you think that the reason it's been undiagnosed Is because you've been so focused on Knox? Or do you think it's also because of medical bias and people not wanting to take you seriously?
Jen: It’s all of that. And especially because I'm a professor, I've only really started to acknowledge it easily in front of students, or when I do artists’ talks, or when I get asked to speak at different places. Just recently, I've been more comfortable talking about it. The minute that I decided to just be really honest, I've had students say, "Oh my gosh, I have it too.” And, “Oh, there's so much stigma. I thought that I was strange and weird and off.” And I’m, like, “Nah, you can thrive and you can succeed; you can be amazing and beautiful.” And again, it hits folks in a variety of different ways. I can be hyper-focused to the point where I'm just exhausted and I can't work on that project anymore. And once I remove myself from it, it'll take me forever to get back to it. And naturally, folks may think of that as … well, you’re just procrastinating and you're lazy, and you don't want to get back to it. It's because I just don't have the bandwidth to get back to it. Because I want to treat it with care, and I know that I can't do that right now.
Lauren: I'm nodding so much to this conversation!
Jen: And with this COVID, it was just really difficult because my priorities changed, and circumstances changed, and my focus level changed. It was rough. And then, I deal with a lot of imposter syndrome … I’m, like, well, I'm not doing enough. And I'm not being the best artist that I can be right now. So I’ve got to keep cranking out stuff. I was going through a lot through COVID because I had so many different opportunities that were lined up, and was thinking, oh, if I only do those things, that's what's going to define me.
And if I'm not doing those things, then I need to be pushing myself to figure out what else to do to stay relevant.
Lauren: Well, it's the exact same experience that you described a lot of your students are going through, a lot of your autistic students … understanding where they fit in the rubric of the bigger picture.
Jen: Exactly, yeah. And then of course, executive functioning and being super disorganized. I'll have 20 different folders on my computer that are labeled the exact same thing. But because I can't find it, and it's on another flash drive, I have to make a brand new folder. Or, if I do a talk at a university, I have to create the same folder with the same amount of work each time; I don't just have one folder that has everything. I have to create another folder each time.
Lauren: I want to call that a fault in tech design, too, because it hasn't taken into account the needs of people with different behavioral needs; it's taken on one point-of-view really.
Jen: Yeah. I'll go back, and see, oh, I made a folder that was already called ‘Women's March 2019’. But I made five other folders that were called the exact same thing. Because I knew I couldn't focus on trying to find the folder that I made, and that I would feel better starting a new one that has the same exact images that the other folder had.
Lauren: And then you're repeating the cycle, too.
Jen: Yeah, so now I've tried to create a template of slides where, if I'm going to this location, I know that I can recycle a slideshow, maybe repurpose and add a few images — without making myself feel so overwhelmed.
Lauren: That’s smart. But it sounds like this is something that you'll probably be in the process of getting diagnosed once COVID has become more manageable — because it's something that you're becoming more and more aware of just now. It's interesting that it's taken so long, because you say that you yourself suffer from imposter syndrome. But I would also argue that there's a level of also being ignored by clinicians … that plays into one developing imposter syndrome, right? If you've been gaslit or had adverse experiences or traumatic experiences, like you mentioned with your birth, those are going to be experiences that inform the way that you move through the world. So this is informing the way that you're responding to this revelation. But it also sounds like you're perfectly equipped to advocate for yourself when you do get there, when we get past this COVID hump.
Yeah, and I just hope that when I move forward to get the diagnosis, hopefully I'll be taken seriously.
And I'll be, like, “Well, look … these are the things that are happening. I'm not necessarily saying that, oh, I want medication, can you give me something to cure me, or to control me. But let's talk about strategies. Or, let's talk about other ways that I can help to balance and to manage.” Right now, I’m using my art, and I'm using all these other aspects of creative expression to help me navigate through that.
Lauren: And you're teaching your son to do that, too, which I think is super amazing.
Jen: I'm really trying to find how I can treat it in a really holistic way because that in itself defines wellness to me.
Lauren: I love that you say that. And I think also when you come across those practitioners who are maybe exhibiting bias, giving yourself permission, right, to move on to the next one?
Jen: Yeah. So I'm sure that'll be another story.
Lauren: We’ll have you back on to talk about that!
Jen: How many primary cares are going to be, like, “Are you sure? Well, we don't think so.” Or, "You’re just blah, blah, blah …” Even explaining it to my husband, I had to constantly say, “Look, these are the signs and you see this and this and this and this.” And even when I'm telling a story, it takes me 15 minutes just to get to the point.
Lauren: I would disagree with that. You've done great today!
Jen: Because this is a very organized setting. Trust me. And I'm very considerate of your time.
Lauren: Oh, my God, I'm trying to be considerate of yours, too. So we're both moving along with it.
Jen: And I think I'd even said to you via email, I ramble … or something. Or maybe I said it to somebody else.
Lauren: But truly, you haven't rambled. Everything you've said has been so relevant. I'm so honored to have had you on to talk about this stuff.
Jen: It's because it takes that much power to keep me in tune because I'm constantly trying to figure out the word. I say I want to be organic, but then I also am afraid that if I'm too organic, I'm not necessarily gonna say the right thing.
Because again, I'm trying so hard to be perfect and to have impact and to make sure that everything that I'm saying is on point, effective.
Because I'm speaking on behalf of so many people.
Lauren: Yes, that’s a big pressure.
Jen: Yeah, it's a lot of pressure making sure that I do my due diligence. And it's a lot, and that in itself can just weigh down Black women.
Lauren: Yeah, but I'm glad you bring that up too, because I think a lot of the Black community right now is feeling fatigued. But Black women are probably bearing the brunt of that, and have for a very long time. This is a huge discussion that’s coming up again, as all of these recent attacks and murders have been covered from whatever angle on the news. But it's always Black women who lead the charge for change, who will not accept the things they cannot change. Create the change. So, we have you to thank for all of the change that's coming our way.
Jen: Yeah, and like you said, Fannie Lou Hamer … the list goes on … Ella Baker, all of these activists, Black women who were disabled and or who had their own way of defining what resistance meant to them. They were “unbossed”, as Shirley Chisholm says, “unbought and unbossed”. We lead the charge, we create our own tables and we know exactly … when you put us in control, trust me, we're gonna make moves — because it is a survival game. And so we do what we gotta to do.
Lauren: And I'm so appreciative of you taking the time today to share some part of your journey with activism, with creating this change from such a very personal place. Because that's what you're doing with your presence on social media, and giving a really personal insight into your life, your life with an autistic son, and as you continue to expand on your own experience. This is a beautiful thing to witness. And I hope that more people will be aware of what people like you are doing, and listen. I would love for you to also tell everyone where they can find you online as we wrap things up.
Jen: So I'm at JenWhiteJohnson.com. That's a personal space where I talk a little bit about my teaching and my teaching philosophy, and I have student work that I've done — activist projects that I've done with my students. And then I also talk a little bit about the art builds that I've done and the different communities that I've been a part of, and collaborations. And then AutisticJoy is a website that is really dedicated to the disability advocacy, and the artwork that has really sprung from various conversations with disabled folks and things that I've read. And also, my artistic response to being a part of my son's neurodivergent experience. And so I knew that I was gonna have to make another website that was dedicated to another aspect of disability justice and disability advocacy.
Because we don't really get the chance to see what a lot of Black disabled artists are actually doing.
Lauren: And that idea of joy as a form of resistance, too. Black joy is resistance — it fits with everything that you do, too.
Jen: Yeah, totally, it has to for sure. Yes, I will complain about the injustices and about the erasure of Black kids, and media, and especially Black disabled kids. But then I also want to be able to amplify … okay, well, this is who we are, and we have a lot of joy and a lot of vibrancy to bring to the table, and if you continue to snuff us out of this conversation or to unjustly take our lives, this is what you'll be missing. You’ll be missing the opportunity to be a part of our joy.
Lauren: If there ever was a call for community, this is it. I also want to ask you before you go, Jen, about the Black Disabled Lives Matter graphic you created. What we didn’t talk about is that it’s available as a free download on your website, right?
Jen: So, it's available as a free download because I wanted to make sure that folks could print it and share it and use it as an act of protest and an act of solidarity and ally-ship with the disability community. And I've been asking folks that after they print it and if they use it in protests, to share their whole fun visual experience with me. I've been getting countless images from Scotland; London; Switzerland; San Francisco; Dartmouth, Massachusetts; Baltimore, Maryland; DC, of families using it in their neighborhood protests. And that's just the poster. I’ve also made a printable available of basically an outline of the fist, so that families can color the hand in. I've done that with my son.
It's been a really great tool to use to help encourage dialogue about anti-racism, and what racism looks like in the disability community.
And like I said, again, it may not have value for some people, but it has value for me in terms of … if art can be used as a tool to help create that much-needed conversation, dialogue. But using art to, again, help navigate what that language is.
Lauren: Yeah, and what intersectionality really looks like, right. What true acceptance and community looks like.
Jen: Yeah, yeah. And so I just really wanted to make it accessible to everybody — because again, I didn't make this just for me as a wallpaper, so I can be, like “Oh, I made this …”
Lauren: You're giving your work away for free because you care.
Jen: Yeah. So it's been awesome to get donations. People are, like, “Where's your tip jar?”
Lauren: I hope you've got a link to a tip jar on your social media feeds, too!
Jen: Yeah, yeah. So it's been really beautiful getting the support. It's also been exhausting, because I follow many young Black entrepreneurs, females that are just running these businesses on their own. Like a design here and there that was really just meant for a small community, but Buy Black ended up becoming this way for folks to be, “Well, we want to be able to be allies.”
Lauren: Well, you’re giving us a tool to be better allies, and it's a free tool. And that's the point as well, isn't it, that there's no excuse not to use this opportunity to be a better ally and start having these more difficult conversations that we've all been avoiding for too long.
Jen: Yeah. And if I'm going to create artwork that is going to help amplify the community, then I want you to print it and I want you to share it and I want you to make it your own way to communicate ally-ship, and to amplify the community. Plus, I want to be able to tell people … you have no excuse to say that you aren't given artwork that you could use for free, to share.
Lauren: And beautiful artwork that you can also, as you say, take an interactive moment with your family or with friends; you can color it in if you want.
Jen: Yeah, so that's been really uplifting to see people want to be a part of it. And I made sure that it's not, like, "Oh, just share the social media graphic.” People have been sharing the words and the stats and the facts. And they're also re-mixing it because they're putting the symbol on their windows and they’re putting the symbols on T-shirts, and I've been really open to making sure that people feel that they can transform the artwork.
As long as it's in an act of protest and solidarity, then that's what the symbol can continue to mean for folks.
So yes, that's been a big part of this experience; it has been very rewarding seeing people want to align themselves so much with what the symbol means and what it’s saying.
Lauren: You're actually making me think, what a nice idea to get a couple of friends together — even if we're all six feet apart on someone's lawn — and do a few of those printouts, and then everyone has one that they can either put in their window, or add to some oak tag or something, and bring to an event, a march. So maybe that's the next step for me as well!
Jen: Yeah, and that's what everyone's been doing. And daily, I've been getting DMs like, “Hey, I'm all the way from Dartmouth, Massachusetts.” And it was literally a protest of just white people. You could see one Black person, and then there was a white person holding up this symbol!
Lauren: That sounds about right for Dartmouth, Massachusetts! (laughs)
Jen: And then it was in West Hollywood for the All Lives Matter March. Because people are sharing it with their friends. And then they link it back to the artist. And then they'll end up saying, “Oh, my friend shared it with me. Can I use this for a protest that I'm going to this weekend in West Hollywood?”, and I’m, like, “Sure.” And then I realized that it was like 30,000 folks in West Hollywood.
Lauren: That was a huge march, the big BLM March recently. Not All Lives Matter, but Black Lives Matter.
Lauren: We're not going to go through that distinction for everyone. I've been very clear about that with social media posts and information, but Black Lives Matter.
Jen: That’s my brain, all Black lives matter.
Lauren: Yes. All Black Lives Matter. Absolutely. Your symbol is obviously touching people in a way that is expansive, just like your joy is expansive. The work that you're creating and putting out there comes from an expansive heart-centered place. So I'm just so grateful to have had you on to talk about this more, to share more about your experience as a mom, and your own experience as well. Thank you for the honor of your time today.
Jen: And thank you for giving me the platform, and that it will continue to just make room for other Black disabled folks to come in and speak their truths.
Lauren: Absolutely. If you are Black and disabled, please, this is your open door, send me a message. I'm always happy to have anyone on the show to talk about their experiences. So Jen, thank you so much for sharing yours today. And we look forward to having you back on when you have some more information about that ADHD, and as Knox continues to grow,
Jen: Yes, thank you.