CIIS Public Programs Podcast

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[Cheerful theme music begins] 

This is the CIIS Public Programs Podcast, featuring talks and conversations recorded live by the Public Programs department of California Institute of Integral Studies, a non-profit university located in San Francisco on unceded Ramaytush Ohlone Land. 

Disability is often described as a tragedy, a crisis, or an aberration even though 1 in 5 people worldwide have or will have a disability. Why is this common human experience rendered exceptional? Disability studies scholar Jennifer Natalya Fink argues that this originates in our families. Weaving together stories of members of her own family with sociohistorical research, in her latest book, All Our Families, Jennifer illustrates how the eradication of disabled people from family narratives is rooted in racist, misogynistic, and antisemitic sorting systems inherited from Nazis.  

Inspired by queer and critical race theory, Jennifer calls for a lineage of disability: a reclamation of disability as a history, a culture, and an identity. In this episode, autistic Mestiza, critical educator, and disability studies scholar-activist Sara M. Acevedo joins Jennifer for a conversation that challenges us to reconnect disability within the family as a means of repair toward a more inclusive and flexible structure of care and community. 

This episode was recorded during a live online event on April 7th, 2022. A transcript is available at ciispod.com. To find out more about CIIS and public programs like this one, visit our website ciis.edu and connect with us on social media @ciispubprograms. 

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Sara Acevedo: Thank you so much everybody at Public Programs at CIIS. It is such a pleasure to be back in the space, although remotely. I do miss CIIS. I do miss San Francisco. I do miss the Bay Area and its vibrant activist culture, especially around disability justice. So, thank you so much for inviting me back, I'm so, so delighted to be in conversation with Jennifer today. Her book is fantastic, totally transformational. It especially spoke to me because I am an autistic person, but we will get more into that after some introductions and descriptions, personal descriptions and some land acknowledgements.  

I'll start by describing myself. I am a woman of very pale skin, Mestiza heritage. I have curly hair short to the chin. I'm wearing blue. I don't know if you can appreciate it, but it's blue and it's button down and I'm wearing a gold necklace and I have big brown eyes. And I have a little bit of a purple lipstick. Okay, so with that I'm going to read the land acknowledgment for Miami University, which is where I teach, it is located in Oxford, Ohio. Miami University is located within the traditional homelands of the Myaamia and Shawnee people who, along with other Indigenous groups, ceded these lands to the United States, in the first Treaty of Greenville in 1795. The Myaamia people whose name of our university, whose name or university carries, were forcefully removed from these homelands in 1846. Despite centuries of colonization, the Myaamia people preserve a deep connection to this land and are engaged in a vibrant resurgence of their heritage, language, and culture. Thank you. Jennifer, please, it’s our pleasure to welcome you today.  

Jennifer Natalya Fink: Ah, thank you so much for that introduction. And thank all of you for coming tonight, amidst war, Covid, and all the rest. Happy Thursday, we’re slouching towards Friday, we're almost there on the East Coast, you've got a little more time. I am Jennifer Natalya Fink, she/her/hers pronouns. I'm a white middle-aged woman in a red shirt with black curly hair, shoulder length and a gray background of a lake behind me. Welcome everybody. I'm so delighted to be here this evening to share all our families’ disability lineage and the future of kinship with you, and to be in conversation with a truly brilliant thinker and writer, Sara M. Acevedo.  

I am coming to you live from unceded Piscataway territory in glamorous Gaithersburg, Maryland. And I encourage you, if you're on this call, to take just a second, it takes 30 seconds or less, to Google whose territory you are on. Put in the Google box “Whose territory am I on?” Five seconds and you know, and now you can't unknow that right? And now I have to say I kind of hate it personally when some white lady, in let's just say like a bright red shirt, gets up and makes this kind of virtue signaling proclamation without action. So, let's turn this statement of fact into a call to action, a call to restorative justice. For Piscataway and all BIPOC people, and you to join me, lead me, meet me in that work. One first step that was mentioned was nativegov.org, if you're on Piscataway, you can learn more about the Piscataway people in the present, Piscatawaytribe.org. And a really good resource for action items is NARF.org. And I'd love to hear if people have other ideas about this, including Sara.  

I do have some thank yous. Thanks to Joanna Green, my editor at Beacon, as well as Priyanka Ray, Christian Coleman, Alison Rodriguez, and the whole Beacon team. Thanks to Amanda Ennis, my agent at Trident Media who helped me turn what was a glimmer of an idea into a book. And thank you to the CIIIS team, especially Emlyn and Alex for their hard work making this event happen. And thanks to Sara M. Acevedo, again, for her brilliant interlocution tonight. Thank you, Sara. [Sara: Thank you Jennifer.] And then I just want to thank all my families, just like the title says, especially my daughter Nadia, who is the joy and center of my life, and who might bust in here any minute. Oh, there's the book. Yay, and Sara Sohn, my partner in parenting and more. And then I'm going to thank my ancestors. Thanks to Rona and Cousin XY, Grandma Adina, Shelif Lewis, and all our disabled kin. Zikhrono livrakha, let their memory be a blessing, let their memory be a revolution.  

I'm gonna read, if it's okay Sara, just the first bits because Sara has read the book. I wrote the book. But you guys probably haven't read the book because it came out like three seconds ago. So, I'm just going to teeny bit just so you get what the setup is and there's a story. So, I'm going to tell you a story. Okay, it's quick.  

I’m 7. I'm walking through room after room in my grandparents' cavernous Long Island house, looking for my cousin. “Cousin! Cousin!” I call, wishing I knew his name. “Cousin XY” I call. I know he's a boy, and I'm a geneticist’s daughter, chromosomes count. Cousin XY visits me in my dreams, he has his father's eyes. My Cousin XY, as I called him, was born in 1972 with Down Syndrome and immediately abandoned. He was listed only as “Baby XY.” I always knew my aunt and uncle had quote “given away” their son at birth. His very existence was explained to me as a tragedy. A crisis and aberration that perhaps science could one day prevent. In the hospital on the day he was born, his mother refused to look at his face, “take him away”, so goes the family story. His, my grandfather, a family doctor, the family medical expert was firm “Give him up. You can start over. You have a right to real children. He'll be happier there.” Where was there? I often wondered where my cousin was, who he was. Silence and neurotypical children quickly replaced him in the family narrative. On the rare occasions when his existence came up, “Everyone gave them away.” was repeated as gospel truth. And indeed, in the 1970s, institutionalization, abandonment, and excision from the family narrative was still too often the fate of those labeled incurable at birth. But I discovered that was not the whole truth.  

As with most families, probably yours, the story of my family's disability lineage had far more strands than I realized. In 2017, when I was visiting a far-flung branch of my family in Manchester, UK, I discovered that there was another cousin in my family with Down Syndrome, also on my father's side, buried in plain sight, Rona. Born in Scotland in 1946 two decades before Cousin XY, Rona lived in apparent happiness. First with her nuclear family in Glasgow, and then in a group home called Cosgrove, which her mother helped found for disabled Jewish people. True to her name, Rona means joy in Hebrew. She lived a joyous, Jewish life. So, two of my family members have been written out of the family story. Delineated from our lineage. I mourned what I had never had. Both the lived relationship with my cousins and a family myth that could include them. I wondered how the knowledge of a rich deep history of disability in my family would have changed my experience of my own daughter's diagnosis at age 2, as a disabled non-speaking Autistic person. If I had grown up playing with Cousin XY, would we have experienced her disability as part of the warp and woof of our lineage, instead of as a personal disaster, rending us from the fabric of the family? And in the book, I talk about, you know, that trauma. And where I think it came from.  

Those were the questions that led me to think about disability lineage and what the implications of repressing, hiding, finding, and celebrating it might be for disabled people and their families everywhere. By cutting me off from knowledge of my disabled cousins, I had no source of disability knowledge and history and wisdom in my family. Their lives were treated as extraordinary, disposable, and traumatic. So traumatic that the very fact of them was hidden, erased from the story our family told about itself.  

Now this is typical of how disability is narrated in the family myths passed down from one generation to another. Disability is erased, repressed, covered over. Families delineate, destroy the connection between generations of disabled people, their families, and their caretakers. Our disabled kin are not merely misrepresented. They are written out of the story. By examining the ways families excised disability from their stories, I began to see how disability is fundamentally shaped by this omission. The way we assign meanings to bodies and minds, establish norms, otherwise and stigmatize according to perceptions of ability, is inseparable from how we name and claim our kin. Family is defined and produced by eradicating disability lineage. Often making the inevitable appearance of disability within a given family a crisis, a trauma to be erased, efaced, unwritten.  

I refer to this process as delineation, the separation of disabled people from their lineage. Now, this is what's interesting. The word delineate literally means to mark off with lines and to separate, right? But it includes the word lineate, derived from lineage, family ancestry. So, the delineation I'm examining here is sometimes literal, with the institutionalization of my cousin. It is sometimes rhetorical, as with the suppression of cousin Rona and her disability from the family narrative. But here's the really interesting thing, delineate also means to describe, right? Or portray. A form of inclusion. So, within the word itself lies the potential to re-lineate, to sew a family member back into the fold. To describe, portray, and thus connect. And that's what I explore in this book. I'll stop there for now.  

Sara: Thank you so much Jennifer. My service dog, Coco, has decided to join us. And is really, really heavy. He's so heavy, and he's really. [Jennifer: He’s so cute!] It's really, really emotional to just hear you read it because I spent so much time with this book in the past few weeks, but it just acquires a different quality, different affect when I hear you read it. And it's just so emotional just because it's, I feel it so deeply as a disabled person. So, I often, you know, while reading it. I often wondered. I just wonder the differences, you know, in readership. What? Why? What did it non-disabled people would feel when they read it and, and how different an effect it is for a disabled person, not to separate us. Just simply to expand upon how deeply rooted these histories are within our kin, our disabled kin, as a shade, a cafe, an exhibit, our crip kin. So, thank you. Thank you. It's really, really touched me, very deeply.  

And with that, I would like to ask you some questions, and get more deeply into this conversation. So, the first question I have, and I have context for all the questions. I've always been fascinated by words. I am a trained linguist. So, it comes as no surprise that this aspect of the book immediately caught my attention: delineation, lineation, lineage, re-lineating. So, one of the most remarkable ideas you explore concerns the term delineation, which as you explained carries within itself a history of oppression, and a potential for liberation, in what concerns disability lineage and family narrative. Could you please expand upon this?  

Jennifer: Yeah, definitely, and thank you for sharing with me that this, you know, touched you. That's my greatest wish, it really is. For people to feel seen, especially disabled people who, you know, experienced this in their families. So, you know, as I said in the introduction, delineate has this doubleness, this tension in the word itself. Which is sort of why I focalize a lot with it because it's to cut out, mark separate, but it's also to call in, right? And even that, that demarcation, separation has two aspects of it. The first thing I'm really calling on all of us to do is to assume we always were there. There always were disabled people in all of our lineages. And I was really struck by Stacey Melbourne and others who talk about sort of calling out to ancestor, a mythic ancestral plane, but I start by saying there were no disabled people ever in my family. I thought that's not true. You've been denied that knowledge. Which doesn't mean we need a more spiritual calling out. But we also need to know. And even if it's a little unknowable, let’s say I'm adopted or there was so much silence and now everybody's dead or whatever, just the act of performativity saying “I believe there were disabled people in my family before me. I know that to be true. Even if I can't contact, you know, trace all of them.” I think that changes something. So, that's, that's one piece of it. It's just assuming people existed before us. Right. We were here before.  

So that's one piece of it. And actually, finding them is sometimes easier than you'd imagine. And by finding Cousin XY, I found this other cousin, you know, one thing leads to another. Once you're out about something. Once you're talking about it. It's amazing how that works. And I even have tips in the appendix about like how do you do that, so there’s that, there's the practical piece. But there's also sort of the deeper piece of just what would it mean if we didn't say there were no disabled people in my family? What if we said there were. Right? So that's one piece of it of it. That reimagining, that re-lineating with my cousin story, right.  

Then the other piece that I talk about, about my mom and my grandmother, just there are people in our family aren’t there, who do have disabilities, that there’s a lot of public shame and stigma about talking about it explicitly. This is especially true with mental disabilities. This is sometimes true with autism. And they're not even necessarily invisible disabilities. My grandmother's life was profoundly shaped by her deafness, and it was unspeakable in my family. So, when we reimagine our disability lineage, we also revalue and rethink the people in our family who were disabled but didn't claim that as an identity, I say my grandmother. I can still see the look on her face. She was very phobic about disability, and especially about disabled children, she got this look of disgust, right? Which she might have felt about herself, I don't know. So, but I can claim her as an ancestor. She's passed. And I talked about my ring, I'm not giving you the finger, that I wear on my ring finger that's hers. So, I think it's not all cuddly and warm reclaiming. I'm also, you know, coming to terms with that ableism of my grandmother and my mother, to some degree, right? But we can reevaluate. We can re-signify it. We can change what it means.  

So, the stigma and shame were so great that we never acknowledged the disability in some cases. I'm obsessed with cloth and fabric and sewing and some thinking of this as like, we're sewing this ancestral cloth that we can wrap ourselves around and hand down to the next generation. So, I think that's sort of how I'm thinking about the complexity of this. Reaching back into an unknown past, re-signifying, making a new meaning out of what we do know, right? Valuing it to sew it into a cloth, that in my case I have a daughter with a disability that I can make it usable for her and see her as part of something rather than this, you know, trauma cut out of the family cloth. To see her in that lineage is super important to me. And I use Jewish ritual. And it was funny, I wrote this thing for The New York Times. I said, “I pray to my deaf grandmother,” and they were like “don't you pray to God?” I said, “No. No, I do pray” and they are sitting they’re like “what, what?” But so, for me, the spirituality is in that connection and making that usable for my daughter. And for my family. Yeah. 

Sara: It's fascinating because of all the things you said, just now, I was making myself so many connections to other things, of course in your book. But of course, through my own reading and in my own interpretations. And the things that of course resonated for me and my own family lineages. And when you're talking about, you know, it's not that you didn't have disabled ancestors. It’s that you were denied that history, that part of your history. I immediately connected it with the part where you're talking about genes. And when you're talking about Steve Silberman, and neuro-tribes. And discussing, you know, neurodivergent genes and how old these genes are and, you know, just thinking about how I was denied of that history. Not by my family, because my family didn't even know, but by the systems that the racialized gendered class systems. Those fascist systems that deny people like me an autism diagnosis because we do not conform to a textbook delineation, demarcation of what autism is supposed to be according to those histories of fascism coming from Asperger's to others who have, of course, before them before him, and after. And so that just really made me think about how it's within our families, but it expands into our cultural families, our cultural kin. So that was something that was just thinking about the fact that these genes are old just kind of makes me feel like part of that old gene family of my autistic kin, through genes. And it just felt good.  

Jennifer: It’s so often that all that genetic discourses is used to do is genocidal, right? Abort, institutionalize, keep people from having children, but testing, but it doesn't have to be. I don't see science as the enemy. These are tools. We can use them anyway we want. So that could be, you know, finding your heritage as an autistic person, right? And valuing it [Sara: Exactly.] and diagnosis doesn't have to be delineating. It could be finding your people and tribe. And that's something I talk about in the book. My daughter, you know, I was like “I think she's autistic.” and the doctor said to me “I see a perfectly normal child and a very neurotic mother.” Of course, six months later she had the diagnosis, you know, because she made good eye contact and, you know, the male defined idea of what an autistic kid looks like, right? So, I think the cultural piece is huge. And part of what I…a couple things first. My greatest hope for this book is not that my family, you know, it's not because we're so screwed up that I want to tell the story. We're just one family, right? But what I hope is really everybody, whether they identify as disabled or not, when they read the book, say “Huh, I wonder what my disability lineage was? How could that help me? How could that help my family?” Right? How could that empower us? And the other piece of it is the thing that nobody did when my kid was diagnosed, was say “You're now part of a community”. [Sara: Yes.] Find your people for your daughter she needs to find her people and you as a family, need to find a larger family. It was all “This is an individual problem to be solved.” One doctor said “No, I'm sure you're upset and, you know, get over it because now you have to fight for your kid,” you know, fight for what? What was I fighting? What was this war I was supposed to be in? And nobody says “Find your people. This is an identity. This is a community,” right? It's just this medicalized, individual problem to isolate you. And I think that's such a travesty.  

Sara: Yeah, it really is, I myself, I'm writing right now about autistic activism through the analytic of contagion. [Jennifer: Oh, wow.] To precisely because of this whole, you know, like power reversal. Like utilizing this idea of contagion of a biological, viral, you know, medical unit to then transfer that into cultural contagion. How we are pushed into those fringes because we fight medicalization. And so, it just my approach to your analysis of genes is for the first time I think positive, because I'm so used to encountering people who are so happily telling me that they're that they're still, you know, it’s obviously dated, but people talking about the autism gene and finding the autism, amongst my colleagues, you know. Not my direct colleagues but the people that I encounter in academia wanting to discover the autism gene to eradicate it before they don't even know I’m autistic. Always have this really gut react background reaction to this whole idea of genes. So, this time it was a different refiguration. A different idea of it. Like what you speak of with the, [INDISCERNIBLE] that just regain a different form and thus effect for me. So, it's not I don't have as much of an aversion to it because I know it can be reimagined.  

Jennifer: Oh, that’s wonderful! And I think, you know, too often, there's this false, binary like you're anti-science if you want to societal narrative, but there's nothing just, you know, in the problem is and Rosemary Garland Thompson has been through this, you know, like who's doing this research and with what agenda? You know, if disabled people aren't included in that conversation, right? Then the research aims to eradicate, delineate, destroy, murder, you know? And I think it's so important that we're inside that conversation and not just subjected to these tools. And see them as, you know, community building potentially in some logic. People use ancestry.com to find their lost kin, and their lost heritage, and their ethnicity and like “Oh, I'm part Black, or in part this and I'm part of that.” I think the same thing. Like this could be used productively for disabled people, not to pathologize, or delineate, but to call in to find the cousin, the heritage potentially. So, I think that's, that's a piece of it that I really, because my dad's a geneticist and born into this science discourse that was so toxic and phobic and in many ways. And also, as a queer person, I saw much of the same discourse around, queerness, especially in the nineties, let's find the gay gene so we can get rid of it, right? As opposed to, so that we understand ourselves better and connect more deeply, right? [Sara: Yes.] So, I think that that is really important to me to not kind of not leave science to a genocidal ableist front.  

Sara: Of course, of course. A reclamation. A reclamation of it. [Jennifer: Yeah.] Well, it's clear that you and I could spend hours and hours talking about this. But we are getting time checked, so I think we have to move on. Okay, so moving on to my next question. Okay. So, here's my context. You touch on the inextricable link between the social relations that construct care as a burden and the physical, both the physical and rhetorical delineation of disability from the normative family narrative, which is just mentioned in the introduction speaking of both institutionalization and rhetorical delineation. So, my question is, could you please discuss the implications of race, class, disability, of course, and gender in the construction of care as a burden? And I'm referring to care labor here. 

Jennifer: Yeah. Thank you for that. I'm going to start with a personal admission. That's a little like embarrassing to me. So, when I was pregnant, it was very hard for me to get pregnant. It took me years and there was still, in 2007 the, you know, “do you want a boy or a girl?” Right? And I actually wanted a girl. But you weren't allowed to say that. Right? What you were supposed to say. That's the question. What is the answer? Everyone knows it, “As long as it's healthy”. [Sara: Oh, yeah.] Right. That's the correct response.  

So, when I was thinking about all of this, I start there in unpacking race, gender, colonialism, class, all of it. Because what's happened is we're really dishonest about care labor in this country. When my mother had me, she wanted a boy and had no shame in saying it or telling me. She's apologized since, right? That was the norm. Of course, you wanted a boy. Why would you want a girl? When all the girls do is care for other people? All they do is care labor, right? The truth is girls do other things now and women do other things, but women do like almost 100%. To be a woman is to care. To care is to be a woman in uncompensated, unvalued ways. So, I was very scared of having a child with a disability. I didn't quite, I wouldn't have said it that way, you know, like I had all these layers of denial but I bargained with the universe and said “It's fine. If I have a boy, even though I really want to a girl as long as it's healthy,” you know, and by healthy I meant…what is healthy, you know? If the baby gets, all babies get sick. Like anyone has a child out there knows they just get sick all the time. Point five percent of disabilities are diagnosed at birth. By age 60, forty percent of all people have disabilities. Okay, so this fantasy, this is a fantasy with many layers, right? It's a displacement, because we're not honest about gender and care labor, its displacement. It's on the backs of disabled people. We say it's- we're going to pretend that we don't care about gender. We care a lot about gender because gender organizes everything in this society. But say, as long as it's healthy, right? Well, there are no “its” first of all. Non-binary people are not “its”, nobody's an it. And what are we saying there? We’re saying, “We don't accept a disabled person.” That's totally socially acceptable to say. [Sara: Yeah.] In a way saying I want a girl was not.  

So, I went back and unpacked that and then went into, there's tons, you know, people far smarter than me. [INDISCERNIBLE] Look like lots of people have done a lot of work on sort of the global economy of care work. That really started in carceral slavery, where Black women did the care labor, were the wet nurses. And it was not even in, from reconstruction on, it is not viewed as work. It is part of the condition of being a Black woman. Again, in this country, with our notions of care. Now, it moves to a global economy of underpaid women of color, from the global South from South Asia, who this is the only way for them to get access to citizenship to all kinds of things, right? Compelled, underpaid, still not viewed as work, right? And so, I, there's lots of work on this, but I really wanted to connect that to sort of, you know, I'm a white Jewish upper middle-class woman, you know, that there are a bunch of fears here for white women about being de-professionalized by a disabled child, that you'd be thrown back into this role. [Sara: Right.] Right. And then for women of color, even some white working-class women, what happens is, you don't not get de-professionalized, you end up in poverty, right? Because of the lack of a care system. So, I'm sort of trying to connect these…this whole system. In all cases, the care is a problem to be solved by an individual in our culture. And the disabled person is essentially blamed for it. So, I think that- and I saw that when I looked at the research across the board.  

And then I came back to my own experience of going to these support groups for parents of kids with disabilities that were for parents. But again, the insane dishonesty. It just drives me nuts. Parent groups with not a single male person, with not a single father. And we would be like the only couple you know. [Sara: And that’s normalized too.] Totally normalized, right. So, these are, you know, educated affluent liberal people, you know, like, right. So, I think there's just incredible dishonesty around this. About the gendering of care, the devaluing of care, the lack of any recognition that there could be pleasure in care, right? Or the sharing of it and its inevitability again, right? We're all going to need care at some point in the life cycle.  

And then I also saw this, honestly, in disability justice communities, you know, I felt very scared to say it aloud. I felt like I'm saying something you're not supposed to say, but what I saw was these are young people, who are not doing elder care, who do not have children. There's no space for that in this conversation. So, I think we need to connect some of these forces so that we can sort of begin to think beyond the fantasies of even mutuality is not always possible, right? Everybody will have high care needs at some point in their life if they should live so long. And that this cannot be this silent feminization, you know. That then leads to a kind of fear and pathologizing and delineation of disabled people until we get honest about that. And I don't have all the answers you know and feel like, well fix it! You know, there's smarter people than I who do have good ideas about that. But the piece, this delineation is connected to these fears of women being thrown back into this role without social supports. And some of the mutual aid stuff is really operating on a phantasmatic level, really, about what real care work would be. [Sara: Absolutely.] In a sustainable way. Accessible for everybody.  

Sara: Uh-huh. Uh-huh. And what you mentioned about this idea of de-professionalization, which is the reason it’s a real fear. It's also reinvented within the profession because we are performing care and emotional labor within our professions. Like I have to speak as a disabled Mestiza, immigrant person. How much care and emotional labor I have to perform in the academy. How much is left to me to lead DEI initiatives. To not expect it, but how can I not support a student who is minoritized and is struggling. How can I not resonate with another colleague who is going through the same? How can I not be a part of that lineage? And so, it is reproduced within the family, and then out we are doing the same thing in our profession. [Jennifer: Absolutely.] It's a matrix that is just, and you said it very well. Yes, gender is actually a structuring element in our society in our very patriarchal this cis-hetero patriarchal society. So that's why, and is still why Silvia Federici and other neo-Marxist, feminist, autonomous feminists have discussed it so well. This is why the persecution started so early.  

Jennifer: Yes. Before a child is even born, we're saying “Don’t be disabled, don't you dare be disabled,” you know? And you know, it's understandable in one way because of…not understood like okay, but the fear of being de-professionalized, of, you know, for Black women who have sons who are autistic. It's like, eight times more likely to be targets of police violence, you know, like that's real man, you know? So, I think, but the dishonesty is what drives me crazy. Because we can't really approach this. And there is something in academia of sort of I've heard this discourse that's sort of like women and femmes do all this labor, it's sort of internalized in some way and it's something you understand as a queer person. I'm, you know, and then I see like queer people like dis-identify with that role, but it's not really about identifying with or against it, it's about changing the structure. And that's why, you know, I want to get beyond kind of the identarian way of talking about this, that I was in some way. I was like, “Well, I have an egalitarian partnership with a woman. Well, yeah, I'm not going to be stuck in this…” [Sara: Yes.] “...horrible role, you know.” But it's not really about individual, you know, really the systematic way. And it's not about just identifying like this, you know, dishrag woman who cares for everybody, you know. Or embracing that, you know, I see that in academia as well. Like, they're sort of these things two moves like, well, you know, “I don't identify with being female or feminine a so I'm not going to be in that role,” or “I over-identify. I'm going to embrace it…” [Sara: Yes. Yes.] “... and be like that professor who everybody, you know, and never do my research.” you know, there's that binary, it, you're screwed either way, [Sara: You’re screwed either way, that’s exactly I was gonna say. You’re screwed either way.] Yeah, so we have to be really honest about that. And look at who's not doing care work, which is, and it's not like I hate men. I hate inequality. [Sara: Yes, same] And men do not do care work full stop. [Sara: No, they do not.]  When they barely do, they are treated like heroes. And, you know, so that just has to be exposed and remediated essentially. 

Sara: Yeah. Okay, so much. So much to think about. Okay, where is this other question that I really wanted to discuss with you. Yes! All our families and visions heavily police public spaces, asides that are ripe and prime for divergent expression and cultural reclamation, particular for raced and gendered body lines. As you trace your own family, lineage. You imagine a delineation of disability experience, dislocated from their family narratives into collective kinship systems wherein disability becomes radically visible. Finally, you position disability justice activism as the basis of this reparative re-lineation. Could you please unpack the intricacies of this process?  

Jennifer: Yeah. I mean that's a lot and- [Sara: It’s a lot!] thank you for so clearly articulating, sort of, you know, the heart of the book in a lot of ways. So, I think the core thing that's sort of the starting place for that is really teasing out this binary between the public and the private. Like the family is this private space, right? And then there's the public space. And the part, I get into this around Melissa Blake and the meet your new teacher Tik Tok challenge, this terrific ableist disaster. Using a visibly disabled woman's appearance and saying “Ha Ha kids. This is your new teacher.” [Sara: Oh my God. Oh, I don't know that.] Yeah, so, you know like there isn't a separation really. The family operates in public, right? And the public is imagined in the family, right? What are people going to think about my kid? And people talk about, you know, their fears. It's a lot about the gaze of society, right? That then regulates how the family deals with disability internally, right?  

So, part of why families delineate is because of the imagined public inside the family. And all families exist in public to some degree, right? It's not you go out in the world. So, I first kind of take apart that binary and the that delineation as a regulatory mechanism building a little on Susan Schweik’s work on The Ugly Laws, which just for people being in public, which, which still kind of shape all of this. And then look at my own with the way that operate in my own imaginary, both in my extended family and in my, the family I've created, and staring is like one symptom of that [Sara: And you describe that so well, how you reverse that, and how you use it.] Yeah, yeah. So, I think in re-lineating the supposedly private narrative of the family space, we could change and challenge the public one and vice versa. So, I think for me, like thinking about how the public is operating in this myth, this sort of myth that the family builds about itself and why there's a public imagined in this delineation of disability. So that was important. And then, you know, the disability justice piece is sort of instead of saying like “I just want my disabled kids to be included or my family to be included.” you know to sort of get rid of that binary and celebrate and center disabled people as normal. It's so basic in a weird way. It's just like “What if this were normalized, right?” And part of why it isn’t is because we think it's never happened in our families before until we are diagnosed or someone in our family is diagnosed. So that's part of it. And, and thinking of this, as a collective enterprise means, you know, valuing our disabled kin and our literal family. And I really fight against the idea that if you're queer disabled, you don't have a right to a biological family and ancestry. Like we need that. We need to own that. It might not be your nuclear family. It might be your extended lineage, but I think that's a human need. And then calling that- connecting that to this larger sense of kin that you can only have a few are willing to identify as disabled as an identity and not just a medical problem or an impairment, or a personal body, mind difference that that it is only you or your kid, right? If you see them as a part of an identity with positive dimensions, right? And challenges, but also a positive dimension and connect with other people and see it as collective.  

And this is where since, in fact this isn't my idea, this is really a disability justice idea, that can be part of your kin. And I really want to connect our sort of individual sense of family with this larger sense of kin and say, “Queer people, disabled people we have a right to both and they shouldn't be separated,” and it was so moving to me. I was reading the other day with a friend of mine, David Ambroz Jackson, who's an African-American gay man, who is very embedded in the community he grew up in. And he was talking about like he had siblings, and he had cousins with Down syndrome, and he said “you know, there was all kinds of ableism. But they were never separated from the family” and he was like “yeah, one of them was my babysitter. Like, he was like, “yeah, you white people, man. You're crazy. Like, this is crazy, talk”, you know, not so I think there are models that that it is a particular inheritance of sort of post-industrial white upper-class suburbanite, you know, this kind of nuclear family that, that has a particular kind of violence in its delineation, I think. Not that it does- And I don't want to romanticize everybody else, but you know, that really struck me in a deep place, right? He's about my age, same generation, and he was like “Yeah, that would not happen in a working-class Black family actually.” So, I'm just saying these two things need to be connected, our larger sense of kinship with disabled people, right? And finding our own disability lineage in our own biological or adoptive or whatever family we have, whatever family we come from and not being denied that.  

Sara: Absolutely. And it's often so difficult to find that within our biological and extended families. That that connection to disability community is crucial to our survival. And I can say that about my disability justice community, which is, you know, one of the best things that I could, you know, I cannot even muster without getting emotional. Just how much I draw strength and inspiration, not inspiration, born inspiration to live and in commune and be in solidarity with and reciprocity and mutual aid and just understanding our crip wisdom, and in our care networks. Like Leah Lakshmi Piepzna-Samarasinha so eloquently and so beautifully elaborates in all of her works. And so, and that's been so important to me and that, you know, came along with this whole idea of I was diagnosed very late in life as an autistic person, and then finding that community was also such a- like a saving more like it. I don't know what I would do without the knowledge I have from my community because I have no knowledge that is positive from the medical community regarding anything that has to do with autism because none of it recognizes me as autistic or deals with any of my challenges or any of the things that I would need to thrive as someone who is quote. You know who, if I would have lived during the year, you know, at the contemporaneously with, with Hans Asperger. I would have been, you know, obviously, categorized and separated all along, the ones who were marked for living, but for, you know, experimentation and, you know, all of these horrendous things. But today, that means that I'm not considered to be a part of my autistic kin. So also, you know, demonized along with neurodiversity activism by a lot of people who opposed it as being fake, as not being really autistic. 

Jennifer: Right, if don't fit this one model of autism, you have to fight to prove that you're autistic. And if you do, you have to fight to prove that you're human. You know, it's like either way, you're screwed, you know, like either way like this model really doesn't work for anybody as far as I can tell. 

Sara: Exactly. And that does not preclude a recognition that there is privilege in being a speaking autistic. And then also not being a Black autistic, because of what we've discussed. There's  violent public spaces that make up Black autistic, non-speaking bodies a target of violence, brutality, and death. But then those two can be- can can co-exist. But it's obviously intricate. And Jennifer, I have a last question for you. I know we don't have tons of time, but let's see if we can get it in there. Okay. So, Jennifer you build on feminist theory to discuss how capitalistic economy a capitalistic economy of care undergirds the racialized, gendered, and class distribution of labor. We discussed this, right? So, within this system, we also discussed that care work, care labor is often invisible, that's precarious, because it's often unnarrated. Right now, I want to connect that back to autism. So, what I would like to ask is could you please expand upon the precarious nature of care work in connection with this proliferating narratives of an autism diagnosis as seemingly unprecedented again, as a traumatic and tragic event for families.  

Jennifer: Yeah. you know, I love how you're connecting things. I think this is part of this like crisis, trauma, epidemic narrative, that instead of an ordinary part of human diversity, neurodiversity is posed as an epidemic crisis. My daughter got diagnosed kind of at the height of that are, you know, that's 2010. And when I would share that, people say “Oh, uh, it's a like, what you're eating or, you know, all this stuff.” Yeah, huh, right. So instead of it and you know, it does in some way come down to thinking about access instead of like pathology. So instead of focusing on how to make education and work accessible to diverse body minds and to value them and go and create equitable systems of self-directed care there's sort of this ableist panic pathologize, otherizing, delineating of autistic children. There's all this sort of gothic imagery and storytelling by moms who do feel isolated and overwhelmed. I don't want to, you know, there are a lot of challenges that my family has, like, yeah, challenges, you know, I don't get into what she can and can't do. But there's a lot, right. But the solution isn't to delineate, pathologize, ostracize, but instead, you know, I think we need a sense of neurodiversity as part of human and familial lineage across generations. Which would also help us have sort of a positive, identity as a community instead. It's like the single individual autism mom's tragic crisis to solve alone. Dad, just supposed to pay for it. You see.  

And so, I think, you know, we have to sort of think about what that pathologizing, you know, tragic hystercist epidemic language, right? This viral and pre-maturely, you know, it's a discourse epidemic. And some of the looking back at the AIDS pandemic. It's some of the same language as used to pathologize queer people and instead think about, you know, what do people need. For them to access care, access education, you know, and that's going to be really different for different people. But to work, collectively to see yourself as part of a community that has value, that has value. So, I think that, you know, that crisis narrative is just so damaging. And I really, I felt lost in it. I just try to describe this. I didn't reject it. I just- it's like I had no room for the joy and particularity of my daughter, you know, yeah. My daughter was collapsed into this narrative. And I was either like a bad mom and somehow, I’d done the wrong thing, or I was like a victim of my child somehow, you know? Just all of it just felt so like fun-house-mirror to me, but that's all that there was. So, I think reclaiming my disability lineage really helped me see us in a different way and find a community that values us. My daughter is going to a birthday party this Saturday with her best friend who is also a non-speaking autistic letter board user who she's known for almost like 8-9 years. Now, you know, they're both 15, they're going to be in each other's lives their whole I bet, you know, like our families are connected and our kids are connected. That's super important. So, you know, find your people, if you're a parent of a disabled kid, find other kids who share your kid’s disability, find their families. If there's no community, build it, you know, build it can be really small and simple but if you do it over time and don't buy into these pathological narratives. Save yourself a lot of guilt and shame and like let go of all that and figure “What does my family need to live a good life,” right? “What do I need to change systemically, but right here, small local,” you know, finding a community for yourself and your family.  

Sara: Yeah, and you do such a beautiful job at weaving in those contradictions, right? Really focusing on “What is it in the system that is failing?” without your resorting to a social model. You problematize the social model, you speak of Shakespeare's work and you really, really, you know, invoked the postmodern or psychosocial model to explain that her disabilities are embodied, that they’re material that they're concrete, you know, there's not any amount of accommodations or changes that are going to get rid of our embodied experiences. It’s that goes, that lack of accessibility, that lack of understanding of pathologizing narratives, and that fascist legacies do not make our embodied experiences any better. So, this whole idea of understanding that the system interacts with this, you know, the system, you know, propagates these ideas of crisis so that it can interact with population control and, you know, all of these other ideas, but that there aren't sufficient resources to support mothers, of course, who care for their autistic children. In terms of respite, in terms of actual beneficial therapies that are not other therapies. I'm not going to get into that. And all of these things and this is especially so for Black mothers, for BIPOC mothers. And, and so it's not easy to just claim and this is and McGuire's narrative and The War on Autism. This whole idea of like, let's just blame the parent without looking at the system. So, it's not one or the other. It is looking at how they both work, and that's what you also do in your book so beautifully, how do these systems and these experiences within the family work together and unpacking them. 

Jennifer: Thank you. 

Sara: I’m so glad you to have been in conversation with you. This is just, it's been amazing. Thank you so much for sharing so much with me and with everybody else and of course for your fantastic, amazing, wonderful book. People, please read this because it's just- anyway, I've said it all, I think.  

Jennifer: Oh, Sara it means so much to me that, you know, that it means so much to me that this had value for you, it really does. Both emotionally and intellectually, you know, it's just sort of a dream to engage, and I feel like, you know, you're making me think about a million things too.  

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Thank you for listening to the CIIS Public Programs Podcast. Our talks and conversations are presented live in San Francisco, California. We recognize that our university’s building in San Francisco occupies traditional, unceded Ramaytush Ohlone lands. If you are interested in learning more about native lands, languages, and territories, the website native-land.ca is a helpful resource for you to learn about and acknowledge the Indigenous land where you live. 
 
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