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Episode 8: Despite the Barriers, There’s Joy

Wednesday, March 10, 2021
GUEST: Stephanie Keeney Parks, PhD Candidate
Department of Anthropology | University of California, Los Angeles

Stephanie Keeney-Parks joins us this week to discuss all things Autism. As a scholar, academic, and researcher, and mother of a son diagnosed with Autism, she shares her unique perspective and insights with listeners. We talk about the multiple layers of oppression that children of color face in this country, and what it means to have joy despite all of those barriers. Don’t miss this incredible conversation and learning opportunity!

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As language, perceptions and social mores change at a seemingly faster and faster rate, it is becoming increasingly difficult for communicators to figure out how to refer to people with disabilities. This style guide, developed by the National Center on Disability and Journalism at Arizona State University, is intended to help. It covers almost 200 words and terms commonly used when referring to disability.

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OUR GUEST: Stephanie Keeney Parks

Stephanie Keeney Parks Professional Photo 600

Stephanie is a doctoral student at the University of California, Los Angeles, in the Department of Anthropology, where she studies medical/psychological and linguistic anthropology. She also holds a master’s degree in medical anthropology from Creighton University, in Omaha, Nebraska.

Stephanie’s research centers on the everyday lives of Black parents who have children with autism. She is also interested in the process of diagnosing a Black child with autism, as well as the healthcare disparities these families face. Stephanie is interested in centering the Black parent’s narrative and experience as the expert to decenter white ideologies on health, healthcare, disability, and Black culture. Her research stems from her experience as a Black woman, wife, and mother of two children. Stephanie’s oldest child is diagnosed with autism.

TRANSCRIPT

Sarah Kirwan

Hi and welcome to Incluse This! I’m your host, Sarah Kirwan, and this is a movement for disability equity. Today, we’re talking with Stephanie Keeney-Park, and we’re talking about uplifting and amplifying the voices of disabled women. Stephanie is a doctoral student at the University of California, Los Angeles, in the Department of Anthropology, where she studies medical/psychological and linguistic anthropology. She also holds a master’s degree in medical anthropology from Creighton University, in Omaha, Nebraska.

Sarah Kirwan

Stephanie’s research centers on the everyday lives of Black parents who have children with autism. She is also interested in the process of diagnosing a Black child with autism, as well as the healthcare disparities these families face. Stephanie is interested in centering the Black parent’s narrative and experience as the expert to decenter white ideologies on health, healthcare, disability, and Black culture. Her research stems from her experience as a Black woman, wife, and mother of two children. Stephanie’s oldest child is diagnosed with autism.

Sarah Kirwan

Good morning, Stephanie Keeney parks, and welcome to Incluse This! Can you believe that we're here?

Stephanie Keeney-Parks

I'm so excited. Thank you for having me.

Sarah Kirwan

I'm so excited. I remember the first time we spoke was at the very beginning of my planning period for this podcast, when it hadn't really been fully created and I still pretty much had no idea what I was doing, but I, I remember that we had a really great conversation that day with you and I and Dr. Molly bloom. And a few things come to mind when I think about that first conversation.

Sarah Kirwan

The the main thing that comes to mind for me is this laundry list of systemic barriers facing children of color in this country that I basically read off to you, which was like, yes, obviously Stephanie already knows these things, but I'm very grateful that you were one of my very initial conversations because you were so gracious and you taught me so much and educated me on so much. And, I really appreciated that conversation that we had.

Stephanie Keeney-Parks

Hey, right on. I’m glad it was helpful.

Sarah Kirwan

It was! This list that I read off to you included medical diagnoses delays, lack of access to resources, negative experiences with safety officers in schools, healthcare, financial inequities, systemic racism, inflamed relations with police officers as adults. I mean, the list just goes on and on.

Sarah Kirwan

What sticks out for me most is that you said, you know what, Sarah, despite all of that, I really want people to know that we still have joy that despite all those barriers, we still have joy. Hence the name of this podcast episode.

Stephanie Keeney-Parks

Oh, right on. That's great. I mean, we live in it all the time. It's part of the resistance, right?

Sarah Kirwan

Yeah, yes. Yes. And that relationship between joy and resistance. I love that. We're going to talk about that later in the episode, but I think we should start at the very beginning of your experience with your son who is diagnosed with autism. That was something that we started our conversation with.

Stephanie Keeney-Parks

Yeah, sure. Like most folks don't really think about disability because we live in such an able-ized and stigmatized society or enabling and stigmatizing society until it's like near you. Right. My son, having autism clearly changed my world, for the absolute better. Like most people, I struggled getting a diagnosis for him. I knew that he had autism. He was four and not potty trained and not speaking, having some pretty serious tantrums, is inconsolable had some, like really typical what would be autism traits that would be diagnosable. Right.

Stephanie Keeney-Parks

For us, I remember my husband had deployed to somewhere and it was Christmas. And, I was just in tears because for me when, that when Del would tantrum and I couldn't console my baby. Right. Like I couldn't make him okay. I couldn't make him happy. I didn't know how to calm him down. That was just awful.

Stephanie Keeney-Parks

He wasn't okay. That's just not sustainable for me or, for most parents, I also couldn't get our pediatrician to diagnose him and I couldn't get the school district to diagnose him. The school district actually called me and was like, we can't get him to get, sit in a chair. We don't know what to do with this little kid, et cetera. He was in preschool and, had some like global delay and speech delay type diagnoses, but not an autism diagnosis. I just knew that was what I was looking. I went to the base hospital where were stationed and I, and when you go to the hospital, they give you a little sheet of paper and ask you if you will harm yourself or, you need help in an immediate way. And I marked yes. Because I knew they'd take me immediately to a psychologist.

Stephanie Keeney-Parks

I brought my son with me and I, I walked in to the psychologist. They said, what's wrong. We got, are you okay? I said, I'm absolutely not okay. Can't get anybody to pay attention to the fact that my child has autism and I need you to listen to me. That's kind of how our diagnostic process started. Like a lot of folks, when your kid is diagnosed with autism, they'll tell you things like, they just tell you so much silliness. I think a lot of parents, because we live in such an ableist world, we don't quite understand what we're looking at and it, when it comes to disability and you start from this framework of cure, the kid, cure the kid, you know what I mean?

Stephanie Keeney-Parks

Like, where are the resources to cure this kid? And, as you kind of move through the process of learning about a diagnosis and thinking about like what it means to take your child to therapy and what are you really trying to do with your child in therapy, and how does this shape your relationship with your child and their relationship with the larger world and those types of things. You just kind of, or think you should maybe have kind of a switch in how you understand your child. For our family, it went from, Oh my God, it's an autism diagnosis. Like this autism thing to just, this human in front of us is beautifully and perfectly created in the exact way he is. And it's, you know, he's wonderful. He's great. Well, except for he's turning 16 and he smells bad sometimes.

Stephanie Keeney-Parks

Autism didn't make my kid awful. Right. Like, and I think that's important to like keep in the framework because I think I, people apologize to me when they hear my kid has autism. Right. I actually asked, have you ever met him? If you met my son, you would never apologize for who he is. He's, he's great. He's just a great human, you know,

Sarah Kirwan

I love that. We actually have talked about that on the podcast. In another episode, I can't remember which one about people's reactions when we talk about diagnoses and that it's usually, I'm so sad for you.

Stephanie Keeney-Parks

Yeah.

Sarah Kirwan

I was talking about how I just kind of sprinkle it in it's part of my day to day. I'll say it and move on, but people are stuck on that diagnosis and feeling sad and can't kind of move out of that space to join us in the rest of the conversation.

Stephanie Keeney-Parks

And also like disability is not awful like that does not ruin my life. You know what I mean? Like it just, he's lovely and wonderful as anybody else here. I mean, like, and it's a thing, and it's a particular thing when you're like couple it with the racialized experience of being black or raising a black child in the United States, raising a black, disabled child in the United States of black male disabled child, right. Like all the intersections start to come into play and that's, what makes disability difficult in my world is that I'm navigating ableism and racism in like one smush at times, right? Like not just this kid can't, we can't get him to sit in a chair it's that they perceive him as violent and aggressive and scary.

Stephanie Keeney-Parks

And he's just a four year old little dude that needs to probably like jump on the trampoline and get some sensory input and then get to sit down, you know?

Sarah Kirwan

Yes.

Stephanie Keeney-Parks

It's just, it's really quite complicated. And, and when our doctors couldn't tell the difference between what was black culture and what was autism, right? So at times they would diagnose, black language use as non-normative and thus autistic.

Sarah Kirwan

Really? I didn't know that.

Stephanie Keeney-Parks

That was awful. That shows up in my data as a researcher that, because we diagnose and think about what's the unmarked normative way of being as white. We don't just say that this is a white way of being, we just say that, Oh, this is the dominant way of being in the world. If you don't behave like this, then you have autism, right. Which is just this black kid behave in a way that looks normative to whiteness. It's not normative to blackness, it's normative to whiteness, right? Like, are you using language in a way that's normative to what white folks would consider to be the standard. And, and that is a particularly difficult problem to like, kind of, unravel, right? Cause it's if any cultural deviation from what is the white heteromonic norm then becomes non-normative and thus diagnosable. That's like the crux of that particular problem in my world, at least.

Sarah Kirwan

And, I also remember that just triggered my my memory, when we first spoke, you talked about the length of time that it took for his diagnosis.

Stephanie Keeney-Parks

Yep. There's that?

Sarah Kirwan

Yeah and I felt like, and please correct me if I'm wrong, but I feel like my understanding walking away from that was that your son was diagnosed early for a black child, but late on a scale of like a white child.

Stephanie Keeney-Parks

Yes. My son was diagnosed about two months to three months before his fourth birthday. I think white kids get diagnosed around two years of age. So Del was behind. He's showing things like he was completely non-verbal right. He's still not potty trained. He's definitely doing like, he's definitely stimming. And, having sensory input things go on that probably need to be addressed or supported. And, he just showed so many red flags that were dead ass obvious. And, and it's strange because we often like, love to talk about how black people refuse to use, like the diagnosis of autism. They refuse like mental health categories and this, that, and the other thing. It's also true that clinicians refuse to diagnose black kids with autism. They have a real hard time using labels too. We kind of, we have to like, keep that in balance, right.

Stephanie Keeney-Parks

As hard as it may be for some black folks to say autism, or use that term or buy into, like, what is the DSM-5 category is the same thing that is similar in that clinicians refuse to use that category for black kids to at times. Right? So it's this whole conflation of race and disability is just really difficult.

Sarah Kirwan

Man. There's so much, that's so layered within that. What I wanted to ask you about is often times I hear stories about parents whose children are also in school and because their actions are seen as behavior issues as opposed to autism. There's also research that shows that the officers that are safety officers within those school systems have a negative perception of children of color. So, there are all of these different layers of oppression, right? That children of color are facing.

Sarah Kirwan

One of the things that I want touch back upon is what you talked about in the beginning about a cure you want to cure the kid, and it kind of reminds me of saying, we want to eradicate this disease. To me, that feels very much like you want to eradicate the people. What are your thoughts on that?

Stephanie Keeney-Parks

I absolutely hate the idea of, we must cure your child. I, really bristle when people say things like that, at school at UCLA, which has like one of the, like storied, like, psychology centers for autism, and I've, been approached like, well, why aren't you using more of their services? Like they could do so much more for him. And really, my goal for my son isn't cure. Right? Like I don't see anything wrong with him. I do see that, like, he's going to have to participate in a capitalist economy. So, I'm going to have to make sure that he has a skill set to do that, but that doesn't mean I have to cure autism or make him less autistic. Right.

Stephanie Keeney-Parks

Like, and I find, I just find it like deeply frustrating that people can't just be with him as he is created and not think about like how to fix him. When he's not looking at you like that. And, asking what's wrong with. It just doesn't feel good or right. And, Yeah.

Stephanie Keeney-Parks

Yeah. I just don't like it not one single little bit. I've actually had students ask me about this, right. Like I gave a talk once, then a student asked if you could cure his autism, to keep him safe, would you do that? And I just thought to myself, like, if cure his autism, keep him safe. Like he's still black, right? Like he's still got the other intersection. So, either way it goes, the kid's not safe and no, I wouldn't like cure his autism. Like he's perfectly lovely. I would cure capitalist, heteronormative, patriarchal society. That I’d cure.

Sarah Kirwan

When I started working in the intellectual developmental disability community, it was very different for me because I really had been mostly in like physical disability rehab hospital, national wheelchair, basketball association, very much physical disabilities. So, I went into this space of intellectual and developmental disabilities, and I found that I didn't necessarily know how to interact with that, with that community. I think that, and I shared a story one of our other episodes about my experience. There was a, a mother and, her adult child was a fit in the aisle of Target. As opposed to me saying, Hey, you got this. Or, all moms go through this or whatever, something supportive or even good morning or good afternoon, I immediately went to, Oh, I should give some space. I thought about this on the way home from Target.

Sarah Kirwan

I thought, man, did I make her feel worse? Because in my mind I was trying to be respectful and give space. However, in her mind it could have been a shun or, a negative that I didn't engage. And so, I talked with the CEO of the company, I talked with some of the parents, but I think with this community, that there's a fear around how do we interact appropriately? What would you say? You know, if I had come to you with that and said, Hey, Stephanie, here's what, here's how I reacted. What would you advise? Or what insights would you have?

Stephanie Keeney-Parks

You know I, I, have run into this quite a bit and I've had several different, as a parent whose kid did tantrum in public a lot and being shunned for that, or being told, you're not a good parent or what's wrong with your child and this kind of thing. I've also been on the other end where I'm at Target, and I see, a parent whose kid is melting down in the middle of the aisle and they look like, they're really stressed. For me, it's, it can be a give space. It can also be a, Hey, I'm a quick, I'm an autism parent too. Or I I'm a disabled person. Can I grab your purse and help you in any way? Like, can I, help you get the kid out to the cars? Do you need help or are you all right?

Sarah Kirwan

And that's okay, that’s okay to ask?

Stephanie Keeney-Parks

Well, the thing is like, we're humans, right? Like you can run into a human like me, who will say yes, thank you. I appreciate it. Could you hold onto my purse while I hang on to him? So he doesn't hit his head, right? Like, or you could run into a parent who was like, fuck off, because humans react differently. The other thing that I found may be useful is just like standing, if I feel like the parent is okay, but still like having to attend to the situation, I may stand close and just like marshall off the other watchers of the situation, like people who are like, Oh my God, look at that terrible child and their parent, what's wrong with these humans? And you can just tell them, you need to take your mess somewhere else. Or just like making sure that security doesn't come up and do something ridiculous to them.

Sarah Kirwan

Oh gosh, that's such a good point.

Stephanie Keeney-Parks

Especially if it's a black family, can you just be there to bear witness? Because when you, as a white woman step in and say, Hey, y'all need to leave this family alone. She's got this. It’s real different, right? Like you can use your privilege in a way that I don't have that option.

Sarah Kirwan

Yep. Yep.

Stephanie Keeney-Parks

But also each individual human that you come into contact with is going to have different needs. Right? So, there’s no like right or wrong way to do this and you're gonna do it right for some and you’re going to just screw it up for others.

Stephanie Keeney-Parks

You just have to be willing to like, be humble enough to know when somebody tells you, Hey, it didn't approach me in a way that I felt was respectful. Just say, damn, I'm sorry. And take the loss. Don't make them feel bad for not wanting your help. Yeah, just take the loss and maybe the next family that will work for it, but this particular one, it just didn't fit. And that's okay. There's like, literally I can't give you the like one specific way to interact with a family that would work across the board.

Sarah Kirwan

Well, and I think that's the most important point to make is that what I really want our listeners to take away is that it's the conversations, right? It's the engaging, it's the letting the person the disabled person or the family member that's caring for that person be the lead in the situation. I think what you're stating about each person is going to react differently to that is the most important takeaway for our listeners. Because one thing that's happening is that we move away from having a conversation when that fear is wedged between us of how do we speak, what are the right words, et cetera. But, if the person, the disabled person or that person's family member, that's caring for them, is there, they lead the way.

Stephanie Keeney-Parks

Yeah.

Sarah Kirwan

We support. They lead the way. I really like how you said, Hey, is there something that I can help you with? What a gentle approach, Hey, you know what? I have a disability too. You can't even see it. What, I get it, where you're. Can I help you? Something along those lines of support? I love that. How you said that. Well,

Stephanie Keeney-Parks

Well, a quiet like allyship if I know that I’m safe maybe I can let you help too, right?

Sarah Kirwan

If it's a safe space, if it's been, coming from a place of empathy, I think,

Stephanie Keeney-Parks

Right. Or solidarity, and like, this is somebody who knows what I'm going through. So they're not judging me. They're here to help. That's terribly important. I think a lot of us, when our kids tantrum in public, or, have meltdowns and struggle in public spaces, we feel so judged and so traumatized in the moment. We're also scared that our kids aren't okay. That it's real hard to like, keep all things in perspective in that moment. You know?

Sarah Kirwan

Absolutely. I can't imagine that. I, I really still like how you said it, is there something, make that shared connection that solidarity, lay that groundwork and then a gentle ask. I really liked that it can also.

Stephanie Keeney-Parks

It could also terribly not work that day also, so …

Sarah Kirwan

Well, and that's going to happen. I mean, there's some days where I want to talk about, my Ms. There's some days where I'm like, Oh my God, if I have to explain to anyone else why I look so good today, but I feel like shit, I'm going to lose my gourd.

Stephanie Keeney-Parks

Yes, yes. Absolutely.

Stephanie Keeney-Parks

Going back to educating and being comfortable, having those conversations. I remember when were kind of brainstorming a title for this episode, and I said, my experiences as a black mother with autism, I remember you specifically saying to me, Sarah, I need to address that because I'm more than just a black mother. I'm a scholar. I'm getting my PhD at UCLA. I'm a mother. I'm a woman. I'm black, there's all of these different parts of me. I remember you saying that to me. And I was like, no, shit. It goes back to the shared experience. There is, I can understand that because I don't want people to see just Sarah disabled or disabled Sarah.

Stephanie Keeney-Parks

It's just one of the many pieces that make you up, right?

Sarah Kirwan

Yes. And we created that safe space.

Stephanie Keeney-Parks

Yeah. Yeah.

Sarah Kirwan

We had that safe space for you to say to me, Hey Sarah, like, Oh, I didn't love that.

Stephanie Keeney-Parks

I have tell people that really very, quite often though, even other like academics who will ask me to come and give an academic talk, but say, can you tell us about what your life is like as a black mom, we could really learn from that. I have to ask them, well, would you ask any other academic to tell you about their personal life? Or would you ask them to tell you about their research, right. Like how, where, we're in an academic space and still in those spaces, I get read as just mom for them to consume. Rather than like colleague and equitable, that's kind of where my frustration, where that with that comes from, right. I’ve done all the work they've done. You know?

Sarah Kirwan

Yeah. I think that there needs to be a recognition of that. And, even Molly and I had a conversation about that before went into the first episode, because she is a doctor, she is an expert in this area. And so, I wanted to be clear that, and I think I prefaced it with, I'll be calling her Molly because I'm getting still getting used to Dr. Blum, but we also have a friendship, but I wanted people to be well aware that she's a doctor she's earned that degree. So, same thing here that you're earning your doctorate degree, you will be a doctor. And so, there needs to be a certain amount of respect for that work.

Stephanie Keeney-Parks

Or just space for the fact that I too like Molly, well, I'm not the expert yet, but I'm becoming an expert in this particular field. Right. And, and I'm nearly there. It also is, kind of space dependent, right? Like in an academic department where you go to give a lecture, it's inappropriate to ask somebody to just tell you their life story so you can consume that and learn from it. Right. But, on a podcast or talking like, as friends and mom, and we're really actually just talking about my mom experience, and then that's a different thing. It’s just, it's also real context specific. I think. So, it's a hard line to walk that one.

Sarah Kirwan

And it's important for people to understand when we do that, what we're implying.

Stephanie Keeney-Parks

Yes, yes. Right? Yeah, absolutely. That's the whole, there's a reason I went to go get a PhD and a lot of it surrounds the fact that I could never be taken seriously as a black mom. I was always just a research subject, something that, non-black clinicians in particular could just, dismiss or use as the research topic. Oh, that's what the black experience is. Like, come and tell us about that so we can learn. And I mean like, okay. Also I'm not like a research lab rat. Neither’s my kid.

Sarah Kirwan

Very true.

Stephanie Keeney-Parks

So it's complicated. That's also complicated. It's never easy. Nothing's easy.

Sarah Kirwan

How do we recognize when we're asking too much of someone where we should actually be filling in that work ourselves. And I had a guest, he said, if people want to find out information about this, don't expect us to take our time and our energy to educate you. There is enough data and research and resources available in this year of 2021 that you can readily access.

Stephanie Keeney-Parks

It's out there for ya. You know? And that's true. Yes. Like, for black folks we’re like, it's been 400 years, we've been telling you all the same shit for 400 years. So, at some point we have to stop believing that you don't know. It’s like a willful refusal to know at this point.

Sarah Kirwan

At this point, yes.

Stephanie Keeney-Parks

There's some really, like how white people can advocate for black lives matter movement or there's, some resources about, there's other white folks who have spent the time to learn about these topics who teach other white folks about them so that black people don't have to. Inclusion is bullshit. I rock back and forth between it, all the time, right? Like, cause I have a little, I have a son and it's always in the midst of like the disability conversation.

Stephanie Keeney-Parks

Do you want inclusive education where he goes to school with neuro-typical kids. Right. He goes to school with neuro-typical kids and supposedly the data's better than shows that he'll have better lifetime outcomes. Also he's demanded to like fully assimilate into white heteronormative ways. And then, you know, also infantilize him. He's also still at the back of the room with the para, doing different work and the special kid things. It still feels odd and uninclusive, and I struggle with that. Like maybe, why can't he be with other disabled folks and enjoy himself and people who's thinking and feel similar to him about the world, why is that a problem? And it, yeah. Inclusion is hard.

Sarah Kirwan

That goes back to, a very interesting question that I always have when we look at group settings and how we want individuals within the intellectual and developmental disability community to be integrated into society into the community. No more group home settings. I personally have talked with individuals who feel like, you're just saying, why wouldn't it be okay for them to be around people who are, have shared experiences and similar experiences as them. And so, when we tear apart this group home setting, and we put everyone into these homes with someone who's caring for them, but maybe not a family member, maybe not someone that they know, how is that better than being around a community of people who have your shared experiences?

Stephanie Keeney-Parks

You and I do the same thing. You go to wheelchair basketball, right. I go to, I have a black graduate study group and writing group that I go to. We do group activities all the time to get access to the comfort that brings.

Sarah Kirwan

Yes.

Stephanie Keeney-Parks

And I don't think that should be shunned or problematic that my son wants to be with other disabled individuals because they have a shared life experience. I think he should enjoy and partake. I think that the poor lifetime outcomes aren't because he's with other disabled people.

Sarah Kirwan

Right?

Stephanie Keeney-Parks

The poor lifetime outcomes are because we treat that group of disabled people like trash.

Sarah Kirwan

Exactly.

Stephanie Keeney-Parks

Yeah. It's not, it's not because he's with other disabled kids. They're fabulous. Those kids in that classroom are dream. Right. Like they're great kids.

Stephanie Keeney-Parks

I also feel like if he wants to go hang out with neuro-typical kids in gen ed classes, do you kit, like have the option and the opportunity to be where you want to be and do the things that make you happy and comfortable.

Sarah Kirwan

Yeah. Have the options. That's interesting because does that go back to the IDEA?

Stephanie Keeney-Parks

I don’t know. That’s a dumpster fire, so…

Sarah Kirwan

Such a dumpster fire!

Stephanie Keeney-Parks

You know, it's like the only like true bipartisan effort of the United States government. We refuse to fund this through every administration since its inception. We refuse to like fully fund it continuously and everybody votes in favor of that. What in the hell? What in the actual hell? Not that it's a good document anyways, but just, I mean…

Sarah Kirwan

Yeah. What in the actual hell? It’s not even good as it is, but you haven't even fully implemented or funded it period. So you can get along when it comes to…

Stephanie Keeney-Parks

The marginalization of disabled Americans. Yes.

Sarah Kirwan

Yes.

Stephanie Keeney-Parks

The refusal to pay them a full working wage living wage. Yeah.

Sarah Kirwan

Yes. That is the tie that binds.

Stephanie Keeney-Parks

The tie that binds. Yeah. It's really awful. It's legitimately awful. It's legitimately awful. It's, it's really shameful. Also they don't really give a damn, this is another thing where we have what, 50, some years of receipts. It's more than that. Yeah. This has been a minute.

Sarah Kirwan

It has been.

Stephanie Keeney-Parks

Yeah.

Sarah Kirwan

And if you think about it, there has been more attacking of the ADA than there has been of building it out.

Stephanie Keeney-Parks

Why would they ever build it out? They don't perceive you as being full citizens because you cannot participate in capitalist societies in ways that make them happy.

Sarah Kirwan

But that’s only…well, in ways that make them happy. I was talking with a former colleague of mine the other day and she has had multiple TIA strokes, like the mini strokes. She's much more susceptible to COVID-19 yet her employer is making her continue to go into the office because they don't want to give her like every other Friday off. Like, it's very interesting when you say we don't work into their program because they can't, they can’t figure it out.

Stephanie Keeney-Parks

It’s just that you can't conform to the very specific norms. Right? Like, or you won't put your body in jeopardy because you shouldn't have to, I didn't realize like how salient this was until I started to notice like everything about my son's life, right from preschool on is about what are you going to be when you grow up and how do we make you fit that, the white heteronormative middle-class norms, like how do we make your white middle-class member, do you know what I mean? Like, everything's about that. It's not about Del's health care. It's not about his health and wellbeing. It's not about his, happiness. It's not about, it's always about how do we get him to assimilate into a job.

Stephanie Keeney-Parks

And even his most recent IEP, that was like the first thing they said, they were like, Oh my God, he has all these, skills that we can put him in a job. Just thinking like, yes, we have to work in this country. That's what it is. Right. But, also he’s so much more than like worth something because you think you can, the skills are, per job.

Sarah Kirwan

Advocates are talking about employment of people with disabilities and the ADA and reasonable accommodations. What we're not talking about is everything that goes into employment, the person, the transportation, the access to the application, how inclusive is your city? Are there people with disabilities that look like you? Because otherwise, some people don't want to go work there if they don't see other people like them represented, I don't want to teach everybody about disability. I really don’t.

Stephanie Keeney-Parks

And that's literally like the space you get put into, right, or, I don't want Del like sorting silverware, or, when his love is playing the trombone. I just don't want, like, I want whatever he does with his life to be something that's salient and important and like makes him happy.

Sarah Kirwan

I want to go back to our original conversation opener here, which was about the title for this episode, which is despite the barriers there's joy. I feel like we'd be extremely remiss if we didn't talk about black joy and what that means, and you're going to laugh at me. I actually had no idea what this term meant until I was watching Married at First Sight. One of the husbands had a t-shirt on that said black boy joy. For anyone who knows me, I immediately went and researched that, right. I was like, okay, I gotta find out what this means.

Stephanie Keeney-Parks

Yeah.

Sarah Kirwan

In her article for Vogue titled what black joy means and why it's more important than ever writer, Shantay Joseph writes, “Joy and resistance are one and the same. To resist the omnipresent, intrusive, and pervasive nature of white supremacy, we must allow ourselves to be rebelliously joyous. Where society has told us to be quiet and that we're too loud and too different, it is an act of resistance to revel in the joy that they have spent much of history trying to take away from us.” I get chills actually when I read that, it's powerful. What does black joy mean for you, for your son who’s diagnosed with autism, for your entire family?

Stephanie Keeney-Parks

During the pandemic. It's been really hard to find that black joy. When you say white supremacy, you have to like also include the ableism, right? Because Del's black boy joy looks different than a neurotypical child's black boy joy, right. For me, like, yes, I agree with what she's saying, but also like it's more than white supremacy. And I would argue that white supremacy is predicated on ableism they need it needs it to breathe. Right?

Stephanie Keeney-Parks

Like that's part of what creates the fire. But…

Sarah Kirwan

That’s so disgusting.

Stephanie Keeney-Parks

Yeah. That's historically for me, that's like historically, a piece of how white supremacy came to be and what maintains it. It's really useful for them, the ableism shit. So, but again, like for us, it's like Del playing his trombone. He has a bright green trombone and he walks through the house playing his trombone, or, sometimes he loves buddy the elf and he dresses up in a buddy, the elf costume and just like literally enjoys himself.

Sarah Kirwan

Del and I would have the best time because Elf is my favorite movie. When I was actually, when I was writing this little bit of the script for today, I was saying your name. And I was like, Stephanie Keeney-Parks. And, I kept thinking of Elf when he would be like, Francisco, rolls off the tongue anyway, go on.

Stephanie Keeney-Parks

Look, Del loves himself some Buddy. That’s too funny. He loves waterslides right? Like if you've never seen a human love water slides, we had to drive out to Palmdale and drive him past the water slide park that he's been looking up. Right. Cause he just loves those particular water slides, so we drove him out there. Joy because we're constantly demanded to talk about trauma. Like I think a lot of society expects black people to pimp their trauma. Tell me about your traumatic black experience. You can get access to send scholarship. Tell me about your traumatic black experience so we can learn from it. Tell me about your traumatic black experience. Oh, that's not traumatic so now, and now I don't believe you. So now you don't get access to the justice in which you deserve. Right. I call it pimping your trauma.

Stephanie Keeney-Parks

Like we are told to pimp our trauma all the time. I don't know if that's my term or somebody else's. So, it is true and it's really, it's an awful space to be in. To be joyful when people want to like frame you as it's terrifying. Yeah. We face a lot of terrifying shit, but also our people are funny and glorious and beautiful and curly haired and like delicious food cooking and just funny. Many artists, many athletes, so many possibilities, right? Like it's glorious being black, even with everything we face, we're so blessed to be black. We feel that we literally feel that way. Like constantly so blessed to be black. We're fine with us. I think that's what the joy should tell you is we are just fine with us.

Stephanie Keeney-Parks

We love us, some of us, but really it's the other folks that Toni Morrison says it best like white folks got one hell of a problem. That's the truth because like black folks, we're going to be joyful no matter how ridiculous y'all get. So that's really important. Especially to those studying blackness and like health disparities. It doesn't mean that those things don't exist. It just means that we thrive in spite of we love and find joy and do things that are salient to us in spite of.

Sarah Kirwan

With COVID-19. The data specifically shows that communities of color are being impacted at a much higher level…

Stephanie Keeney-Parks

You hear a lot with this COVID-19 or folks are on TV, talking about black folks have medical mistrust of the vaccine, which is true. We don't trust y'all for shit. And we shouldn't.

Sarah Kirwan

Right? I mean, historically, where has that trust been built?

Stephanie Keeney-Parks

Let’s talk about what work that statement does, right? When you say things like black folks have medical mistrust, therefore they're not getting vaccinated. But then you show something that says, well, white people are getting vaccine at four times the rate and then white folks go around thinking, well damn it's because black folks don't have trust in the medical system instead of, Oh, I wonder, did we give them the same resources we gave white folks? Did we, did white folks infiltrate South central LA, and…

Sarah Kirwan

Yeah, they did!

Stephanie Keeney-Parks

Yeah. Girl. Yes. If you would not send your kid to school in that neighborhood, you aren't not be getting yourself vaccinated there.

Sarah Kirwan

Yes! How disgraceful!

Stephanie Keeney-Parks

Right. And this is part of the work that particular trope does, right? Like is frame us as incapable and silly and problematic. And we don't understand medicine and this type of mess, when in actuality, it's a nice, easy coverup for the fact that you just colonized the black neighborhood again and took the vaccines and black people, couldn't get damn access and you didn't give us enough to begin with. Also where is, why is nobody questioning like, Trump's supporters didn't wear masks. Do you really think they're going to put a vaccine in their arm? What about the anti-vaxxer crew that is actually white middle-class college-educated folks. I just, what I mean? Like we have to be real careful when we're like the black community doesn't do X. I mean, we might could not…some of us, but sure as shit, the white folks ain't doing it. So…

Sarah Kirwan

So when I read that article, I was like Oh my gosh, you’ve got to be kidding me. I want to learn more because I'm getting inundated with different ideas and thoughts. For me coming on and having these conversations is just that, I'm not saying that these thoughts are, these ideas are set in stone, that this is the way, and this is how we think about it. I'm just introducing voices to get new ideas into the space that starts conversations.

Stephanie Keeney-Parks

No, that's real. I think, something good to keep in mind in the same way that like we don't demand that white people agree on something to make it so for their cultural way of being, I think it's Angela Davis who said, part of being free for black people is being free to be black in whatever ways are salient, and to understand the world differently from the next black person. Just like, the reminder that like disability in the same way, like all these different, various ways to think about it, just different entrance points and the freedom to like experience it in whatever way is necessary for you, or feels good to you. Or, I try to keep that in mind because working with families, you will find a diversity of opinion about disability.

Sarah Kirwan

The point is to bring different thoughts to the table because if disability, all of them together were so powerful in our voice, but when we stay siloed and don't collaborate, I feel we will not get momentum or get forward progress on the disability rights movement. The other thing is that we're looking at it from such a white perspective. We need people with different ideas, different voices, and let's have the conversation.

Stephanie Keeney-Parks

Yeah, yeah, absolutely.

Sarah Kirwan

Do you have any piece of advice, like a change piece? Like what can I do in my life to be more, to understand? I mean, you and I talked about a lot of layers of intersectionality.

Stephanie Keeney-Parks

One of the most necessary things white folks can do is I identify when they're marking and unmarking their whiteness, right? Whether it's good or bad, right. That an autism diagnosis is constructed in a white historical context, right? That these tests are using white norms as the kind of unmarked norm for how disabled children should be diagnosed. If folks could come away with the fact that culture impedes everything and be able to talk about that without it being like offensive, it's just factual. That would be really useful because a lot of what keeps racism going is like this ability to say, Oh, whiteness doesn't exist or that's not a thing, or like biomedicine and science are without race and that's like not true.

Stephanie Keeney-Parks

So, marking it and leaving that just as a mark, not like, Oh, this is a bad thing because white folks are doing it. Or, autism is a bad category. Cause it comes from this particular history. That's not what I'm saying. I'm just saying that's how it's constructed. We have to be cognizant of it to be able to make headway for how race and disability kind of function.

Sarah Kirwan

I appreciate you so much. Thank you. Thank you. Thanks.

Sarah Kirwan

And once again to our listeners – thank you for spending your time with us and joining the Incluse This! conversation and movement. Incluse This! is brought to you by Eye Level Communications, LLC, a California-based woman- and disability-owned small business committed to having critical conversations – at eye level – that are necessary to move disability to the forefront of the greater diversity conversation. If you’d like to learn more about the work we’re doing, please visit the website at: www.eyelevel.works You can also email me directly at sarah@eyelevel.works with podcast episode ideas, as well as comments and questions.

Sarah Kirwan

Remember to put your disability lens on when you look at the world, and tune-in next week for another stimulating conversation on Incluse This! – the podcast that’s really a movement. Take care and be well.

 

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