Jennifer Natalya Fink on Disability Lineage — What It Is and How it Impacts Families
I’m excited to share this conversation with Jennifer Natalya Fink and get into the nuances of her fascinating new book, All Our Families: Disability Lineage and the Future of Kinship. The premise of Jennifer’s book is that disability is often described as a tragedy, a crisis, or an aberration, even though more than 1 in 5 people worldwide have a disability. She wanted to explore the question: Why is this common human experience rendered exceptional?
Instead, Jennifer is advocating for a reclamation of disability as a history, a culture, and an identity. She is pushing for a world where families see disability in the context of a collective sense of belonging, as cause for celebration, and is a call for a radical reimagining of carework and kinship.
We went deep into this idea of a disability lineage, and Jennifer shared what’s at stake if we don’t know and claim our family history. We also discussed why getting a disability diagnosis can be traumatic for families and how it’s accentuated by how our society thinks about disability. Lastly, Jennifer shared her thoughts on making the care system more equitable by embracing disability as a collective experience rather than something individual families have to deal with.
About Jennifer Natalya Fink
Jennifer Natalya Fink is director of the Program in Disability Studies and a professor of English at Georgetown University. She is the author of 6 books and founder of the Gorilla Press, a nonprofit promoting youth literacy through bookmaking. Fink is the winner of the Dana Award for the Novel and the Catherine Doctorow Prize for Innovative Fiction, as well as a finalist for the Lambda Literary Award. First and foremost, she is a mother; the transformative experience of parenting her autistic daughter is the center of her work.
Things you’ll learn from this episode
- How Jennifer’s own family story led her to be interested in researching disability and disability lineage
- What a disability lineage is
- Why getting a disability diagnosis can be traumatic for families and how it’s accentuated by our society’s views of disability
- The importance of understanding that care and disability are woven into the human experience
- What we are losing out on by not knowing our family disability history as families raising differently wired kids
- How even good-intentioned comments can feed ableist beliefs
- How we can work to make the care system more equitable, including seeing disability as a collective experience rather than something families must face on an individual basis
Resources mentioned for disability lineage
This Season’s Sponsor: Outschool
Whether you’re homeschooling your child, looking to enrich their learning, or just want to give your kids a new way to dive into their interests, Outschool is for you. Outschool takes kids ages 3 through 18 beyond the classroom to explore the topics they love through small, live classes taught by expert teachers, all through an accessible online learning platform.
Back when we were living abroad and I was homeschooling Asher, we tapped into Outschool for classes in writing and Minecraft. Today, Outschool offers more than 140,000 classes in just about every topic under the sun — I just love how passionate they are about celebrating the needs, interests, and learning styles of differently wired kids around the globe.
CLICK HERE to learn more about how Outschool can support your child’s learning journey, and use the code TILT to get a $20 credit towards your first class.
Debbie Reber 00:00
Tilt Parenting is proud to partner with Outschool this podcast season. Outschool’s unique approach to education empowers differently wired kids ages 3 through 18 to dive into their interests in small live classes designed to foster a love of learning, create connections and cultivate independence. Learn more at outschool.com/tilt.
Jennifer Natalya Fink 00:24
Part of the way we’ve told the story of family, which is always a combination of fact and myth, right? When we talk about grandma, so and so and great grandpa so and so is to exercise disability from that family myth. So every time somebody is diagnosed, it’s like, it’s never happened in the history of the universe before. And what I’m trying to do is to explore why that’s true. How we would change that right and what it would mean for destigmatizing, valuing and understanding disability in all our families.
Debbie Reber 01:06
Welcome to Tilt Parenting a podcast featuring interviews and conversations aimed at inspiring, informing and supporting parents raising differently wired kids. I’m your host, Debbie Reber. I’m excited to share this conversation with Jennifer Natalya Fink and get into the nuances of her fascinating new book, All Our Families: Disability Lineage and the Future of Kinship. The premise of Jennifer’s book is that disability is often described as a tragedy or crisis or an aberration, even though as we know more than one in five people worldwide have a disability. So Jennifer wanted to explore the question, why is this common human experience rendered exceptional. Instead, Jennifer is advocating for a reclamation of disability as a history, a culture and an identity. She’s pushing for a world where families see disability in the context of a collective sense of belonging as a cause for celebration, and as a call for radical reimagining of care, work and kinship. So we went deep into this idea of disability lineage and Jennifer shared what’s at stake if we don’t know and claim our family history. We also discussed why getting a disability diagnosis can be traumatic for families and how that is accentuated by the way our society thinks about disability. Lastly, Jennifer shared her thoughts on making the care system more equitable by embracing disability as a collective experience, rather than something individual families have to deal with. And let me quickly tell you a little bit about Jennifer. Jennifer Natalya Fink is a director of the program in disability studies and a professor of English at Georgetown University. She’s the author of six books and founder of the gorilla press, a nonprofit promoting youth literacy through bookmaking. Jennifer is the winner of the Dana award for the novel and the Catherine Doctorow prize for innovative fiction, as well as a finalist for the Lambda Literary Award. But first and foremost, she is a mother, the transformative experience of parenting her autistic daughter is at the center of her work. I hope you enjoy this conversation.
Debbie Reber 03:29
Hey, Jennifer, welcome to the podcast. Thank you so much, Debbie. I’m so excited to be here. I’m really looking forward to getting into your book and your work. But before we do that, would you mind just giving us your own introduction to yourself? I’ve already read your more formal bio, but I’d love to know how you would describe who you are and what you do in the world? Oh, that’s a great question. I am a mom, first and foremost of an autistic 15 year old and I am the director of the program and Disability Studies at Georgetown University, as you probably mentioned, and also an experimental novelist. So a winding peculiar path, perhaps, and I’m also queer. And I think that’s an important part of who I am and how I come to thinking about disability and parenting. And I just have to ask what’s an experimental novelist? Nobody knows.
Jennifer Natalya Fink 04:28
Let me know if you figure it out. I write novels that play with form as well as content and work from the premise that the way we tell a story has everything to do with who we are. So our identities, our histories have and that are central to how we tell the story and how we tell it is as important as what the story is and kind of changes what that story is. All right. That is fascinating. I haven’t heard that before but make sense the way you describe it, and I love that but to
Debbie Reber 05:00
Hey, I really want to talk about your new book, I was thankful to get an advance copy of it before it came out. It’s called All Our Families: Disability Lineage and the Future of Kinship, I was instantly intrigued by the title. And by this idea of disability lineage, that’s a phrase I had never heard before. So could you start us off by explaining what that means? Yeah, by disability lineage, what I mean is that in all of our families, there were disabled people, some of them were institutionalized, some of them their disabilities were invisible, like mental disability, or sometimes labeled as mental illness. So those disabilities may not have been recognized, or those people may have been marginalized, institutionalized, separated, delineated from our family, it’s nonetheless, they were there, they might not have the exact same disabilities as ourselves in our children, but they existed. And part of the way we’ve told the story of family, which is always a combination of fact and myth, right? When we talk about grandma, so and so and great grandpa, so and so is to excise disability from that family myth. So every time somebody is diagnosed, it’s like, it’s never happened in the history of the universe before. And what I’m trying to do is to explore why that’s true, how we would change that, right? And what it would mean, for destigmatizing, valuing and understanding disability in all our families. Yeah, that conversation just feels so fresh and new to me, I think that’s why the book itself really caught my eye. It’s just a concept that I had never considered it. And even as you explain it, of course, those people are in our past, but we may not have had the language for it, or I’d like to hear a little bit more from you why that happened. I mean, I know that writing this book was very personal for you. And you share your story in there. I’m wondering if you could even just share a little bit of your own story and how it led you to explore this through the book and in your own world.
Jennifer Natalya Fink 07:15
Yeah. So when I was seven, my aunt and uncle gave birth to what, my aunt did the giving birth, to a child with Down syndrome, who was sent away at birth separated from the family, and not referred to, kind of excised from the family story, except at strange moments. And it’s important to note, I’m the daughter of a geneticist. So the genes you have or don’t have are crucial, right? So I grew up knowing about this, but not knowing this cousin, or what had happened to him. Fast forward 30 years, as 30 plus, actually, I had a child, I have a child who was diagnosed at age two and a half with non speaking autism, right. And I experienced that diagnosis is very traumatic, as sort of unprecedented, how do we fit into this concept and construct a family. And, you know, I went to shrinks, I read all the things, but it was almost assumed in all the literature that this is traumatic and unprecedented. Right? And you sort of have to melancholic Lee kind of get over it, but you’re abnormal, you’re not really fitting into this construct of family. And it made me think, in some way about why it seems so unprecedented. There is disability in my family story, but what happened to it, it was suppressed, the literal person cut off from our literal family. And the story of family was told as if there wasn’t any discipline. Right? So I was thinking about that also, as a queer person. This echoed sort of my experiences, I call it a 20th century queer experience where even in a very liberal progressive family, there was no precedent for being a queer person. My parents couldn’t imagine their daughter would be a queer, it wasn’t even like Don’t be that it just wasn’t even imaginable, right. And I had no sense of a queer family story, a queer history, there were, of course queer people in my family lineage. So would echo that in some way. So I brought some what I know as a queer person, my daughter’s 15. Now many things happened. I became very interested in disability studies, which really challenges a lot of the frameworks through which disability is understood. And instead of seeing it as an individual medical problem to be solved, it’s an identity to be celebrated. So that was all helpful. And I began doing scholarship and teaching that eventually became the Director of Disability Studies.
Jennifer Natalya Fink 09:56
But this question of, you know, how do you imagine your Family and your future and kinship. When you can’t imagine disability lineage? Well, you can’t, really is the problem. And even in disability studies stuff, and Disability Justice stuff, I found there was a lot of reference to sort of a mythic family, like, on the ancestral plane, there are these people who were disabled who came before me who can be like my spirit guides, but not in my own family. And many of the disability, just people would say, there were no disabled people in my family ever. And that cannot be true. I began to think about how we got here and how we could do otherwise, and how its wound around racism, sexism, homophobia, all kinds of things, the notification and institutionalization of disability in the post war era, all kinds of stuff, interesting, depressing stuff, right. But also to use a lot of disability justice and Critical Race frameworks to think about how we could connect this idea of a chosen family and community that is such a rich idea from disability justice, and critical race frameworks, with our actual biological, or adoptive family with the family of origin, to not treat these as an either or that I don’t think that serves us in how normalize D stigmatize and integrate disability into the human framework. Wow. So you’ve covered so much, and that I was like writing all these notes and like, Okay, how do I follow the thread of my brain here? First of all, just to kind of take a step back. I mean, you talked about the identification of your daughter as being autistic when she was two, and that that was really traumatic information for you. But can we talk about just that idea of why is it this trauma for so many families? And I mean, trauma is a powerful word, right? Why is it something that we really can’t even compute? Maybe in our generation, maybe it won’t be for the generations to come? But can you talk a little bit more about that, and why that is the way we’re kind of set up as a society to respond. Yeah. I mean, there’s not one reason but I want to add, something I talked about in the book is sort of as long as it’s healthy, you know, that phrase that we all said, when we were pregnant, right? And what is that phrase in response to a very particular question that’s about gender, right? Do you want a boy or girl? Or do you know if it’s a boy or a girl as if those are the only options? First of all, right? And there’s only one right answer to that question. And it’s like, I don’t care, as long as it’s healthy. Right? So there’s a lot of investment, there’s a displacement, first of all, of our anxieties around gender, actually, and care is what I ended up exploring in the book that we’re very worried about who’s doing care and who’s not doing care. And we’re very worried about having a high needs child, basically, because if you’re a white, middle class woman that’s going to D professionalize you, because of the way we’ve chosen as a society to arrange and distributed unevenly care, if you’re a person of color, if you’re a woman of color, if you’re working class, it can, you know, knock you into extreme poverty, right. So it’s not that we’re bad people to be displacing these anxieties, but they’re, it’s a very ablest way of thinking about gender, and care, and disability. So I think we have to get much more honest about the incredibly misogynistic and racist structures of care that we have in this country, all of which are predicated on a an ableist fantasy that like, this is going to happen to someone else’s kid, and I magical me, I’m going to be 29 forever and never need care and have no elders. Good luck with that. Sweet is what I have to say about that. Number one, that’s just not how being a human works. And we have to have a real, real talk about who’s doing care and under what circumstances because we’re all going to need care. We’re all going to be disabled if we live so long. One in four people have a disability worldwide point 5% Approximately are born with a disability. By the time you reach age 60 It becomes more like 55%. So care and disability are woven into the human experience. And we can integrate that into our understanding of parenting, gender, race, care, the whole ball of wax or not, but if we don’t we fuel an ableist paradigm where it is tragic to have a disabled child and it delineates you and it cuts you off from the norms of parenting.
Debbie Reber 14:59
Yeah, I’m glad you talked about care. That was one of my questions. And that was actually a big part of the book, you write a lot about care. And that’s something I had to deal with finding like a mother’s helper. And you know, that kind of support, I had the privilege of being able to work from home and have these kinds of options. And so it isn’t something that I personally have thought a lot about. But the way that you address it was fascinating to me. And it is so tied together with the experience of raising a disabled person and neurodiverse in person and what that journey is going to look like for our families.
Jennifer Natalya Fink 15:32
Yeah, yeah. And, you know, it does look different for class privilege people, but not, but not entirely, right. So I think it is woven into sort of the ableism, fueling a lot of our conversations around disability and our fear around disability, and viewing it as a medical problem to be solved rather than an identity to be integrated. I didn’t actually plan to write about care when I sat down to write this book. It’s interesting, but I found there was that to write about disability lineage, and why we disavow it meant writing about care, and caretakers. Caregivers are part of the story. The second piece of this is, once you start being out about your family’s disability and disability lineage, especially the stories come out of the woodwork, right. So I always knew about my, I call him cousin x, y, because I never knew his name. And the State gave him his father’s name. As part of their delineation from the family. He’s not even listed in the records with his own name. So I call him cousin X. Why? Because all I knew about him was that he was a boy and in my family have a geneticist from his arms matter, and his extra chromosome really mattered. So I connected in in 2017, with some distant relatives in Scotland who I had met growing up, and found out that there was another cousin, who I didn’t even know existed, even though I knew everyone else in this family, who had Down syndrome, and her name was Rona, she’s passed away. But her story becomes sort of a mirror parallel to cousin X wise story, because she was fully integrated into her family until she became ill. And my cousins, second cousins and aunts and uncles, created a care institution that was very cutting edge and progressive for Jewish people so that she could live a Jewish life because there’s no separation of church and state at the time in Scotland. She had this whole life that I knew nothing about that my grandfather didn’t know about. Right? So I uncovered this other whole story of our disability lineage that I didn’t even know about that if I had been searching for and willing to talk about with these extended family members, I never would have known I go to cost growth. And I entered, which is the care facility that my family helped start, where Rona lived. I found out that she didn’t die there, she died in a hospital because the care facility wasn’t prepared to take care of people with Down syndrome with serious illnesses. So there was sort of a somewhat tragic ending that I didn’t know about that my family members didn’t tell me about, that I found out from the caregiver who worked with her. And I also found out that it was really only the women in the family who were involved. The men wanted nothing to do with this. And the women really dedicated their whole lives. So you learn a lot from the caregivers. They’re part of the story, right? You can’t tell the story of disability and family lineage without it. And this lineage is complex, right? It’s not happy stories, always. Some of them are about institutionalization, you know, murder, in some cases, right? But there I also have a sense of who Verona was now of personality and character. And I talk about reclaiming her for my daughter, looking at pictures of her and seeing my daughter and her I also talk about, there’s sort of two facets to this process of reclaiming your disability lineage and relent eating one is this kind of literal, like finding the people who’ve been excised from the story in like, who is that person in a photo album or who is that uncle who’s referred to but somehow disappears, right? They’re all findable. It’s worth their records out there. There are people willing to talk about it right. Then there’s claiming disability in a more nuanced way that maybe hasn’t been named and your family and I talk about my grandma Dina, who There was this fabulous socialist folk dancing, you know, Adelle Davis Health food, not before anyone else was, who never worked outside the house, never wrote a check in her life, adored me, and was deaf. And we did not talk about it and how it really shaped her life. When she had no positive identity as deaf, she wouldn’t wear hearing aids, she was ashamed and embarrassed about it, she had no identity, she didn’t sign, couldn’t lip read, she had no identity as a deaf person, no positive community, etc, etc. My mom, and she wants me to always say she didn’t really become deaf until her 60s, she was hard of hearing. And she really embraced the overcoming narrative. She got a PhD from Harvard after raising two children. And being a special ed teacher, she has published a million books. She’s like the world’s best listener, right? Because of her hearing impairment, pays extra attention. She wears the latest and greatest hearing aids. But again, we couldn’t really talk about this as disability in the face. So only at the end of the book, do I realize wow, write in you know, across the table from me are sitting disabled people, right, who it’s been verboten to name and claim as such. So that’s part of the journey that I went on, and that I encourage others, you know, the point really isn’t, you know, my particular messed up great family, but for everybody to find and claim their disability lineage. And I would love to know, how would you define the cost of not doing that? I mean, I’m sure that you having that knowledge back when your daughter was young would have made a difference and how you navigated that. And so what are we as families raising neurodivergent, disabled kids? What are we losing out on by not understanding our family history? Yeah, I think that’s such a crucial question. We’re missing a positive sense of identity and connectedness, we’re missing a sense of normalization. This is a normal part of family life that’s happened before. Right? We’re missing a sense that this is part of family life, as opposed to this exception. Deviance almost. And I think, in practical terms, it makes it harder for us to find our people, our kin, when we don’t claim this in our families of origin. It actually keeps us from finding our community beyond the family, what we don’t value in our family we don’t then look for in kinship in the community, those two things are often opposed by disability justice folks, and queer folks say, you know, like, Ah, my family of origin sucks, and they don’t understand me. And there’s nobody likes me, and then my family of origin, but I’m going to have this chosen family, that’s going to be amazing. And then the chosen family has all the flaws of the family, because they’re just people too. They don’t have the same deep links as the family of origin. And they’re things you get from that you’re entitled to. And I say this over and over. I think every human is entitled to a family of origin and an identity in that family. So I think that’s something every human wants and needs. And I don’t think we can have healthy, full, extended family, non biological kinship relations. Without it actually, those things are connected.
Debbie Reber 23:42
And now a quick break for a word from our sponsor. Whether you’re homeschooling your child looking to enrich their learning, or just want to give your kids a new way to dive into their interests, Outschool is for you. Outschool takes kids ages three through 18 beyond the classroom to explore the topics they love through small live classes taught by expert teachers, all through an accessible online learning platform. Back when we were living abroad, and I was homeschooling Asher we tapped into old school for classes in writing, and yes, Minecraft. Today Outschool offers more than 140,000 classes and just about every topic under the sun, and I just love how passionate they are about celebrating the needs, interests and learning styles of differently wired kids around the globe. Learn more about how Outschool can support your child’s learning journey at outschool.com/tilt and use the code TILT to get a $20 credit toward your first class. And now back to the show.
Debbie Reber 24:49
You have a chapter in here called disappearing in public. You wrote that “Children are trained to be able to spy their parents in relation to the gaze of an imagined public. They fear now not only the hated abandoned disabled other, but more disturbingly, that they too will be hated and abandoned even by their own families, should they be disabled.” And I read that it just kind of hit me just thinking about how young this starts and how ableism is really the water that our kids are swimming in. I’m just wondering if you can unpack that a bit the way that disabled people are perceived in public spaces?
Jennifer Natalya Fink 25:25
Yeah, yeah, I started thinking about this, because I was remembering how when I was little, when I was about nine, I got pneumonia. And I remember wondering if you know, and I lost a lot of weight, I didn’t look good. And I remember wondering if my parents would need to give me a way to like my cousin, right? So the messages we give our children about disability, whether or not we have a disabled child, are that it’s conditional love, you know, you’re loved and valued, because you’re not disabled. So every ablest thing we do communicates that when we say, oh, that poor kid, you know, you should be nice to Johnny, because he’s disabled, he’s in a wheelchair, he’s confined to a wheelchair, not use a wheelchair user, it, you know, even some well intentioned statements like that, where we think we’re teaching compassion or telling our kids that, you know, disabled people have less value than non disabled people that they’re to be pitied at best. It’s an exceptional Act to include them rather than the norm. Right? So we’re giving these messages all the time, whether we have disabled children or not, that there’s a hierarchy, and we value somebody’s minds more than others. So I think we have to really think about that, even if our charity and compassion in some of those paradigms are deeply ablest to and can reconfigure things. So disability is a normal part of being a human. And that’s where we, as parents of disabled children can really be leaders. I think that’s where our communities, led by disabled people, are important. I think if you’re a parent of disabled child, find adults, find community, with your child, with other families that have that disability or similar disabilities, not a single clinician, I went to the best of the best doctors, you know, developmental pediatricians, neurologists. You name it, OT, PT, all the T’s, right. Nobody said, find community for yourself, your family and your child. Nobody said that. It was all you need to get it together to fight for your child. It was like what am I fighting here? You know, so I think that’s key. Right? And then also finding adults, especially for neurodiverse kids, who are successful in ordinary ways, right? Who aren’t geniuses, there are no more geniuses in the neurodiverse world than there are, you know, I always say I am smart. I am not a genius, you’re probably not a genius. Most of us aren’t. And you don’t have to be a genius to earn your right to life. Sorry. Yeah, that isn’t a requirement for anybody. So I think finding average people living productive lives with the disability that your child has is crucial.
Debbie Reber 28:38
So good. I want to talk about the two appendices at the back of the book. So one of them is about claiming your disability lineage. Can you share some of the suggestions you have for readers on how to do that in their own world? Yeah, yeah. And that’s really, to me, in some ways, those appendices are the heart of the book like that. The most important part is what people will do with this, right? How can you use this stuff?
Jennifer Natalya Fink 29:05
I think the simplest thing is to start asking family members about family members, basically, who you suspect had a disability that either wasn’t named as such or wasn’t spoken. And don’t get put off by they may use very ableist language, like don’t freak out about that. And even if they can’t name it, you can. So just asking questions is important. And then public documents. We live in this world where if it was printed and published anywhere at any time, it is findable. Let internet, I found so much stuff about my cousin, that nobody had told me that in some places contradicted the family story, right? So I think finding those documents can be really eye opening. And assuming there is a paper trail people don’t just disappear. They don’t. So I think that like, that’s a myth. That’s an ableist myth that they were somewhere else. We don’t know where they weren’t, they were somewhere specific, and it’s findable. So I think those records are really helpful in finding and then even let’s say, worst case scenario, you know, you’re adopted your you can’t find anything about your birth family, just imagining, even if you can’t find hard, concrete evidence, just imagining there were people like me or my child, in my family law, I think that is powerful. Just making that myth of family, which is, oh, it’s always part myth, right? It’s a story we tell about ourselves and our families, it came to be assuming there were people like us, I don’t have evidence of any queer people in my family. And I know they were there. So even when you can’t find concrete evidence imagining it, you’d be surprised how much you can find. And then I think there’s the complicated thing of, for example, addiction is a disability as defined by the American Disabilities Act, the social definition of addiction is not a disability. But if you include addicted people in your disability lineage, you’d be surprised how much it grows, right? That is technically by the most conservative legal definition of disability. But we as a society, the sort of the social construction piece of decided it’s not all failure, right? So I think that the other thing is, is looking at disability, both in a broader way, redefining it, claiming it. And also that this is part of, you know, in some way, instead of saying this, just you know, reifies, this binary between disabled and non disabled people saying, this is also about valuing all body minds in all their diversity, and it’s changed. I don’t identify as a person with a disability. At this moment, I could tomorrow, things can change a lot in 24 hours, right? The truck could hit me and whatever, I could have a seizure, anything good happens. And if I live long enough, it will but for now, it is not useful for me to define myself as a person with a disability. However, this Reclamation has changed how I think about my own body, mind and how I show up. For example, I told you, I have COVID Right now, no shame in my game, I’ve right now. Need to stop and drink. Before I thought about disability and claimed my disability lineage, I would have felt that I had to, you know that it was unprofessional to share that. And now I bring my body and mind at this moment to any conversation.
Debbie Reber 33:08
Great. Before we go, I do want to talk about the other appendix, which is recipes for revolution. Similarly, I got to those like I love when people kind of break it down into me like, these are the things to do, because it really feels like a manifesto in that way. And I love that, that recipe for revolution is about reimagining care and community. Could you just take a few minutes to talk about how making the care system more equitable would involve seeing disability as this collective experience rather than this is just something your family has to deal with.
Jennifer Natalya Fink 33:40
Yes, so I think the first part is finding community and seeing disability as being part of a community as opposed to an individual problem to solve, right as a collective identity, which is very antithetical in some ways to, you know, our American up by the bootstraps ethos, but it’s part of how we got into this mess. So, that’s the first piece, and I think transforming so there are organizations out there for just about every disability, including for families. Some of them have already done this, but really transformed using disability justice principles, to transform them from sort of cure slash advocacy, to really transforming and making more equitable care, right treatment, all that stuff really and centering disability disabled people themselves in it. Sometimes that means me stepping back as a parent and I do list some of them but when, you know, I went to a parenting support group that was really mostly parents venting, and connecting in a strange way and it was all women there were like, no dads, there were parents. So I think, you know, equal participation by all parents. It’s important to not seek to expose the gendered apparatus in this. And then in turning those organizations into disability justice organizations that will look at this collectively and demand access, expanding what you mean by access using some Amir manga says, ideas about access intimacy, instead of like I’m begging you please to make this accessible, centering disabled people’s experience in accessibility conversations. And this is the complicated tricky part that I’m sure you’re navigating that all parents, I think are navigating, is we want full integration and participation of our disabled children and all disabled people. Absolutely. But on what terms do they enter, and at the same time, there’s a need for a separate community, both those things at once, that’s where you get through evolution, and insisting that disability be a part of every conversation on diversity, equity and inclusion. And as a university professor, I work on it, you know, on that front, but whatever organizations at your job, your church or synagogue, or mosque or whatever communities, you’re already a part of, that may have nothing to do with disability on the surface, insisting that as we as a culture in to engage diversity in a meaningful way, that disability and diversity of body minds is a part of every single conversation, I may have some others that I’m not remembering, but those are sort of the central pieces of it. I think they’re their pieces, like normalizing diverse developmental narratives, right? That everybody doesn’t leave home, everybody doesn’t live independently. And that doesn’t mean you’re a failure as a parent, that doesn’t mean your kids’ a failure, right, normalizing and making that visible being out about your disability, but your family’s disability. I think that’s really important. And I think just encouraging disability identity. So many parents said to me, including universities, or you know, my peers at the university, these are highly educated people who would join every anti racist, anti sexist group in the world would say, thanks to me, like, well, you know, you don’t want to talk to that person, because it’s like a club that bring you into, or my kid, you know, was diagnosed with this, but we don’t talk about it. Because, you know, we’re triumphing over it, there was a lot of ablest pressure from parents, on their kids still today, to dis identify with this as an identity, that’s, that precludes excellence that precludes success that precludes individuality. Right. And that is ableist, and so harmful to children. And I teach these kids, when they come to university, and they say all my life, I’ve been told to suppress, hide my speech impediment, and shamed for it. And, you know, this is claiming this as part of my identity, is the most empowering thing that’s ever happened to me, you know, the stories from kids who are successful enough, quote, unquote, to get into Georgetown, right, telling me that the single most harmful thing that has ever happened to them in their life is not having their disability, but their families, encouraging them to isolate, to suppress it, to deny it. So I think we want to stop that and encourage our family members to name and claim with pride, their disability, and we can only do that fully if we claim our disability lineage. And we leave that for the next generation. I talk a lot. The two directions that’s how we create a legacy for sure disabled can be wonderful.
Debbie Reber 39:16
That’s such a great note to end this conversation on. I just want to remind listeners that the book is All Our Families: Disability Lineage and the Future of Kinship. Is there a place where you prefer listeners to check you out whether it’s your website or social media or both?
Jennifer Natalya Fink 39:34
Yeah, both are fine. I’m Jennifer Natalya is my handle for Instagram. I’m not on Twitter, but that’s probably the best place to contact me. And you can find the book pretty much everywhere a disabled autistic person designed the cover. Disabled person is narrating the audio book. It is available on audiobook and it’s available from Penguin Random House, it’s available on Amazon. It’s available at all the places. And I love hearing from readers and talking to parents. I’m very happy to talk to synagogues, churches, parenting groups in some way. You know, I want everyone to read the book, but most of all parents with disabled kids.
Debbie Reber 40:24
Wonderful. Well, thank you. Thank you so much for everything that you shared today. And for putting this work out into the world. I think it’s a really important conversation, and I’m just grateful for that.
Jennifer Natalya Fink 40:36
Oh, thank you so much, Debbie. I so appreciate your podcast and so appreciate you taking the time to talk to me about all our families.
Debbie Reber 40:47
You’ve been listening to the Tilt Parenting podcast. To go deeper into this episode, visit the extensive show notes page. For every episode, there’s a dedicated page on my website with links to all the resources mentioned, a full transcript and a podcast player with key takeaways marked so you can easily go back and relisten to the sections you’re most interested in. Just go to tiltparenting.com/podcast and select this episode. The Tilt Parenting Podcast is hosted by me, Debbie Reber, author of the book Differently Wired and the founder of Tilt Parenting. This episode was edited by Andrea Curtis-Amezquita, and show notes were put together by myself, Andrea and Lindsey McFadden. If you get a lot out of this podcast and want to help cover the costs of its production, please consider joining my Patreon campaign. On Patreon you can sign up to make a small monthly contribution as little as $2 a month and it’s super easy to sign up. Just go to patreon.com/tiltparenting To learn more, or click on the Patreon link on any show notes page. To follow Tilt Parenting on social media go to @tiltparenting on Instagram and Twitter and on Facebook. Lastly, please help this podcast stay visible and easily found by the listeners who need it by subscribing and leaving a rating or review on Apple podcasts or wherever you listen to podcasts. Thank you so much. And that’s all for this week. Stay safe, stay well and take good care. And for more information about this podcast or any of the resources that Tilt offers, visit tiltparenting.com
Do you have an idea for an upcoming episode? Please share your idea in my Suggestion Box.