Sperm banks and palliative care with Kelly and Anne McGuire

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What does it mean to care for people and worlds that cannot simply be “fixed”? In Part 2, Eleanor Drage continues her conversation with Kelly Fritsch and Anne McGuire, authors of Broken Worlds, Disabled Kin: Strategies for Collective Survival, exploring disability justice, collective care, maintenance, reproductive technology, and risk.

The conversation examines how mutual aid and disability culture can offer alternatives to social abandonment, and how palliation can help us live with loss, uncertainty, and ongoing change. Fritsch and McGuire also unpack how ideas about genetic and psychiatric risk can reinforce ableism and eugenic thinking. Together, they ask what it would take to move beyond “fixing” individual bodies and instead build more accessible, supportive, and just worlds.

Kelly Fritsch and Anne McGuire are scholars and authors working across disability studies, accessibility, technology, care, and disability justice. Their work explores collective survival, interdependence, and how disability perspectives can challenge dominant ideas about health, risk, and technological progress.

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Transcript:

Eleanor Drage (00:53)

Welcome back to The Good Robot. I'm in conversation with Kelly Fritsch, who is a Canada Research Chair in Disability, Health and Social Justice, an Associate Professor in the Department of Sociology and Anthropology at Carleton University, and Anne McGuire, who is a Full Professor and Director of the Programme for Critical Studies in Equity and Solidarity at the University of Toronto.

And we're discussing their brilliant book, Broken Worlds, Disabled Kin: Strategies for Collective Survival. In this second part, we'll be talking about sperm banks, schizophrenia, and the importance of palliative care. So, welcome back.

Kelly Fritsch (01:33)

Thank you for having us.

Eleanor Drage (01:35)

To begin, an anecdote likely familiar to many of us who work in or frequent public buildings: an elementary school in eastern Ontario was forced to rely on buckets to collect rainwater because maintenance work was deemed too expensive. And in the book, we see many examples like this, and I'm sure this kind of accidental, haphazard mode of maintenance is very familiar to people who work in the public sector. So you say that this isn't accidental or unfortunate, but instead, this is a manufactured breakdown of public institutions so that private schools can swoop in and create a market for themselves, amongst other things.

And these buckets are like the teachers that are forced to be responsible for the decaying building and the safety of the children, and all these things that teachers have to do that we don't give them credit for. The buckets are a technology of self-responsibilization. This is a neoliberal tactic of making a systematic problem the problem of the individual, the problem of the teacher and the student. So, what do buckets as a non-maintenance practice tell us about what coping strategies individuals are expected to take on in society?

Kelly Fritsch (03:01)

Thanks, Eleanor. The buckets in this story really show us that we have to work from where we are with what we have against systems that turn structural barriers into private burdens. And so, as we talk about throughout the entire book, but with this example in particular, the leaking pipe couldn't be repaired because of chronic government underfunding of public schools. And so staff replace the ceiling tiles with metal grates that allow the water to drip down into these buckets underneath while they sort of wait for an uncertain amount of time for a full repair to happen.

And so, in the book, we read these buckets and grates as a kind of harm reduction tactic. They're preventing mold, they're reducing the risk of physical injury, and they're also staving off the worst effects of this infrastructural failure. But, of course, nothing is actually fixed here. And this kind of harm reduction can't actually be mistaken for justice.

And so, in the book, we actually include a photo of the leaking hallway, a photo that was shared amongst hundreds of other photos taken by parents and students and education workers across Ontario as part of the Fix Our Schools campaign, which is a community-led group that continues to push for increased funding to ensure timely and good repair for all of the province's publicly funded schools. So the buckets, therefore, are a practice of keeping each other safe for now, while communities continue to fight collectively for something better. And another example that we talk about in the book is the hashtag Power to Live campaign in San Francisco, where disabled activists organized amid power shutoffs in California in 2019 in order to support people who are dependent on electricity, like ventilator users. And they did this while linking this work to larger struggles against private industries that are profiteering off of electrical infrastructure.

And then throughout the book, we also take up everyday, less spectacular practices like the, you know, would be familiar to many people, like making soup for an unwell neighbor, or checking in with friends who are navigating a mental health crisis, or the kinds of everyday hacks that disabled people use as they move through hostile, inaccessible spaces.

And we do this because, for us, disabled mutual aid, do-it-yourself cultures, and forms of harm reduction offer really powerful examples of how communities respond under conditions of social abandonment by trying to build alternative infrastructures and strengthen collective capacity immediately, in the right now, rather than trying to wait for a repair or a cure that actually might not ever come.

And so these are often cross-movement and cross-disability solidarity practices that create this anti-abandonment infrastructure and produce forms of collective power that are decentralized. And when they're decentralized, it means that they also cannot easily be shut down by systems of power. And so we map examples like these across many different contexts to connect these struggles that are often siloed and individualized, or just treated as, like, really local failures.

And doing this kind of work really helps collectivize these experiences of brokenness and politicize these conditions that might otherwise, when you're just looking at them individually, seem really disconnected, right?

So, like, the leaking Ontario public school and the failing California power grid, you know, connecting these struggles can help shore up forms of solidarity that can really collectivize across different forms and sites of abandonment.

Eleanor Drage (07:12)

And there's a really interesting story in the book where your mom gave you a figurine symbolizing resilience and courage that had previously been broken and repaired by your grandfather. And it had met a similar fate in your own home. I don't even have anything made of china because I'm so clumsy.

So many listeners might be familiar with the practice of kintsugi, which is a Japanese practice of filling in broken pieces, often with liquidized precious metals like gold, not to restore or occlude the brokenness of an ornament, but to make that brokenness beautiful. But you say, though, that this is not actually a repair, and I'm interested to know why.

Anne McGuire (07:57)

Just to say that I also don't have a lot of breakable things in my house with three young kids. But that's part of the story too.

So the story I tell in the book is, as you're saying, about a porcelain figurine that was passed from my grandmother to my mother when my mother was undergoing cancer treatment, when I was a kid. And then, much later, my mother gifted it to me at a difficult moment in my own life. And if you can imagine the figure, she kind of has her chin up, this determined posture, and she's kind of a symbol of resilience, perhaps refusal. And as far as objects go, you know, this kind of porcelain figurine is not my aesthetic. But the gift and the gifters meant and still mean a lot to me. And so I put her on a shelf in my living room. And then she shattered. And I mean, like, shattered into dozens and dozens of pieces, some of which were so small I had to pick them up with a pair of tweezers. And the break was really sad for me, but it also ended up being really generative. Her shattered body revealed things that I otherwise wouldn't have known, including the fact that, as you mentioned, she had been broken before. And it also pushed me to think about longer and larger histories of these kinds of classed objects, including white supremacist and colonial histories of porcelain itself.

But because of the figure and the people she came from, and the kinds of discoveries that I made after the break really mattered to me, I commissioned a kintsugi artist in Toronto, Shushi, to mentor me. And I had originally come into this process thinking that, you know, kintsugi was a repair practice that highlights cracks with gold and makes brokenness beautiful. And Shushi was really quick to kind of correct me that this is a pretty flattened and very Westernized understanding of the practice.

So, you know, again, the break and all the relations that emerged out of it really pushed me to engage with non-Western approaches to mending that really challenge this idea that we typically have of repair as a kind of return. The work performed by this, like, 10,000-year-old mending tradition isn't about restoration or wholeness. It's about becoming with and through alteration.

It's about living with damage and recognizing that care and fracture and histories don't just disappear when we mend things. They accumulate, and they become a part of what something is, or what someone is.

You know, all this was happening as we were writing the book, and the figure really became this important object that helped us theorize the multivalences of brokenness and repair, helping us to reconfigure our understandings of repair away from Westernized notions of return and restoration, and really offering a means of attending to the entangled relations of damage and harm, refusal, resistance, and care that accumulate in bodies and in objects, across bodies and objects. And so we told that story in the book. It's just a short story, to kind of honor that relation with that object and the kinds of ways it provoked our thinking.

Eleanor Drage (11:04)

And that reminded me of Brian Johnson's attempts to de-age his penis and repair his body to a much younger form. You know, this ridiculous idea that we need to return to youth, it feels desperate and completely misses the point, very detached from reality. One kind of anti-repair practice you explore is that of palliative care, or palliation, the importance of just being there. And palliation is compassionate caretaking when something cannot be repaired. It's not for recovery; it's for making the present bearable.

And a couple of years ago, one of my really good friends' husbands died of cancer, and he was thirty-three. And the process of palliative care was so complex, partly because in the UK you can't get palliative care medication urgently. You have to go through a system, which meant that people existed in a lot of pain and couldn't get the right thing. So it can be heartbreaking, but I think also we don't have, certainly in Anglo-American culture, a way of doing palliation.

You know, it's an amazing vocation for those that specialize in palliative care, but, you know, we don't understand what it means to look after people at that point in their life. And it's obviously really isolating, particularly for people my age who go through that. But it's a really important process. So can you tell us more about the concept of palliation and how it can help us work towards collective survival?

Kelly Fritsch (12:52)

Thanks for sharing this story, Eleanor. Palliation really helps us think and name a form of care, as you said, that's not organized around cure or recovery. And that really matters because so many of the dominant responses to brokenness assume that the goal is to fix something back to how it was before. But when we are thinking about palliation, we are thinking about it in the book specifically in relation to confronting ecological crisis and planetary loss.

And, you know, when what we're depending on is burning and flooding and overheating and disappearing, palliation gives us a way to stay with damaged worlds without pretending that they can simply be restored, but also a way of staying with these worlds without abandoning everyone who's already living here and trying to make a life within these damaged worlds.

So palliation is not resignation. It's not saying nothing can be done. It's actually a practice of showing up when there's no guarantee of any kind of repair. So it means protecting one another from further harm when done well, making suffering more bearable, and refusing to leave people and species and ecologies alone in their devastation.

So, on the one hand, palliation is grief work, but it is also world-building work. And so, in the book, we're really interested in the etymological tension within palliation. So its etymology means both a covering over and a shielding. So palliation can be a way of sheltering one another from hostile conditions while still telling the truth about those conditions, confronting them, facing them. So it doesn't deny that there's loss, but it also tries to find ways and make room for joy and pleasure and imagination and dreaming and, of course, care in the middle of this loss.

So, you know, thinking in terms of collective survival, palliation really teaches us how to act without the fantasy of certainty. And on a burning planet, some worlds and some futures are ending. And so, you know, the capitalist promise of endless growth, endless extraction, endless repair- this is a lie. You know, sorry, I should say, spoiler alert: I'm ruining capitalism for you. But this doesn't mean that no futures remain. And disabled ways of knowing really help us live with limits without treating these limits as failures.

Anne McGuire (15:36)

And just if I can pick up on that, I think palliation can become a kind of, or has become throughout our book, a kind of anti-abandonment practice. It's the importance of just being there, but the kind of "just there" is doing a lot of heavy lifting, right? Like, being there can mean a lot of things. It can mean tending, witnessing, protecting, mourning. It can mean organizing, imagining, and building forms of care for worlds and in worlds that we may not ourselves get to inhabit.

So, for us, this work is deeply connected to disabled kin. It's a responsibility to stay, to hold, to make life more possible even where our repair isn't guaranteed, working toward more abundant and hospitable worlds without any kind of certainty that we will arrive at those worlds, or that the worlds that we imagine will actually be the worlds that we need in the future.

So, another link, you know, another kind of point I wanted to raise around palliation is that palliation really responds to the fact that crisis is uneven and it's ongoing. And that makes it a really useful frame for us to understand how to act under these conditions. Disabled people are so often the first to experience what it means to live in what we might talk about in terms of hostile conditions. What that means is that there's already a deep well of knowledge about how to live with and under these conditions.

And as Kelly mentioned earlier, disabled communities have long been developing collective strategies for survival, ways of sharing resources, adapting environments, and caring for one another despite profound brokenness. And that knowledge, as it unfolds in disability community and culture, is rarely individual. It circulates, it's passed around, it's changed and repurposed, and co-constructed.

So, for example, we talk about projects like Notes for the Waiting Room, where people with chronic illness share very practical, everyday strategies for getting through periods of flare or crisis to make that knowledge available to others who might need it in spaces like clinics and waiting rooms. So they leave these pamphlets in waiting rooms, for example. Or during COVID, or, you know, still-unfolding COVID pandemic, disabled communities, you know, were among the first to share intimate and detailed knowledge about masking and risk and mutual aid and ways of building communities remotely, and these things that others were kind of encountering for the first time, you know, at the onset of the pandemic.

So I think that's where palliation can become really important, because it really helps us to recognize that a lot of care doesn't look like fixing or saving. It can look like mutual aid. It can look like informal acts of checking in, sharing information, redistributing resources, adapting together. It's often small-scale, as Kelly was mentioning earlier. It's ongoing. It's often not very visible. But it's what mitigates and shields harm in a really material, tangible way. It addresses and assuages pain in the now. It sustains life, and it also really critically makes room for joy amidst loss. And so, just a final point on this, palliation also asks us to kind of rethink our relation with limits.

So we're often told that limits mean failure, or that you can overcome anything if you really try hard enough. But the concept of palliation and disability culture, I think, more broadly, really offers us another way, recognizing that some limits are unjust and need to be challenged, while others are immovable, and that life can still be meaningful and even generative and beautiful within these limits.

Eleanor Drage (19:29)

And I found that really interesting and surprising intervention. But then I was even more surprised when we ended up in the sperm bank, which is a place I did not expect to be in this book. And you say how the legitimacy of sperm banks is haunted by the dread of disability. And sperm and egg banks still carry a eugenicist flavor. And I think, actually, you know, probably most of pregnancy, there's a flavor of that that you get each time you talk to a medical professional. So you set this section within a history of non-consensual insemination and eugenicist obsessions with Olympians and Nobel laureates and their sperm, of course.

And can you explain what is going on there? Why do we care about these people? And how does that disavow contextual and environmental factors that shape your academic and social success? Let's start there.

Kelly Fritsch (20:27)

Yeah, I mean, I think this is such an important question because one of the things that we are trying to show throughout the entire book is that brokenness is not simply a property of individual bodies, right?

So, in the sperm bank story, disability is really imagined as a kind of haunting specter in the genetic material, something that's hidden; it's lying in wait, something that's threatening to emerge in the future. And so the sperm donor is initially marketed to the prospective parents through this fantasy of high-quality heredity. The sperm is imbued with high intelligence. It's said to come from a donor who has a track record of achievement and social success, and has desirable racial and gender traits like eye color and height.

But then later, once psychiatric diagnosis, hospitalization, and criminalization enter the story about who this donor is, the narrative really shifts to dread, recasting the child who's conceived with this sperm as having a very risky future and a body that needs to be perpetually monitored and surveilled at the very first sign that there's, you know, disability there as a kind of threat. And so what really piqued our interest in this story is how quickly risk became individualized.

And this, you know, turn to individualization really focuses on the interiority of the child, what is indelible and inside this child, what might appear later, what needs to be monitored, prevented, treated, or managed. But in framing it this way, it really obscures the fact that we are all risky biosocial possibilities. You know, who we become is shaped not only by our DNA, but by the environments that we inhabit and the very many conditions under which life is made possible or impossible.

And so, you know, we engage with this in the book to think about it in the context of brokenness and repair, where then the question becomes: not how do we repair the child or the donor, the gene, or the disability to come? Because that kind of question really keeps us locked into a eugenic logic where repair means absolutely moving away from disabled embodiments.

And so the question that we want to ask instead is: What broken relations make disability appear only as dread? And what would it mean to actually repair the social, material, and environmental conditions that turn embodied difference into crisis, into abandonment, and reduce life chances? And so this is where, again, for us, making disabled kin becomes really important. So a disabled haunting can be really frightening when it's organized through surveillance, prevention, and perpetual medical management. And I think that's so many people's experience of disability, unfortunately. But it can also teach us something. It can make visible how the past actually lives in the present through these histories of eugenics, institutionalization, traumatic exposures, toxic exposures in our environment, racial capitalism, psychiatric violence, and even through forms of reproductive control. You know, if we sort of sit with that haunting differently, it can move us away from the fantasy of this risk-free reproduction or risk-free embodiment, and instead push us towards a politics of collective risk and responsibility.

So when we say we're all risky sociobiological possibilities, we're not saying that we all have the same risk or that these differential risks don't matter. We're instead saying that risk is relational. It's unevenly distributed through environments, histories, institutions, and infrastructures. And so a more just response is not to monitor some bodies more intensely in the hope that we can manage disability away in some way, but instead to build a world where many kinds of bodyminds can flourish.

And so, in that case, collective risk mitigation means access; it means care support; it means the flourishing of disability culture; it means economic security; it means non-coercive healthcare, you know, and an abundance of social relations that don't treat disability as the worst possible future, which is the thing that gets stuffed down our throats over and over again.

And so this kind of, like, collective approach to risk mitigation that we really are pushing in the book means a kind of shielding and protecting of vulnerabilized people and ecologies from new or further forms of disablement and debilitation, especially when disability, as it is so often, is an outcome of structural violence and these kinds of broken-by-design systems. And so, repair in this way, then, is not to repair a supposedly defective body, but it's the transformation of the world that makes some lives feel like they're damaged even before they've unfolded.

Eleanor Drage (26:02)

And one of these examples of someone who was made to feel that way is the son of Angela Kalina and Elizabeth Hansen, if it's fair to say that, who came to them via a sperm bank. And he discovered, and his parents discovered to their horror, that the top-quality, expensive sperm they had paid for came from a man who, and I quote, had been hospitalized multiple times for issues relating to bipolar, narcissistic personality disorder. And so they were very unhappy, and in true American form, they sued the clinic. And then their poor son subsequently asked, "Am I okay?" and they replied to him, "You're fine right now." And, of course, we are all, to some extent, risky sociobiological possibilities. So what do we infer from this really crazy story?

Kelly Fritsch (26:56)

You know, one of the other things that we talk about in the book is about the ways that disability inheritances can be biological; they can be genetic, they can be epigenetic, but they're also cultural and political. And so one example that we give in the book is of Stacey Park Milburn's Crip Socks, which she describes as connecting her to disability community.

And so the socks, which are these soft leather, heel-less boots, were passed down to her by queer disabled poet Laura Hershey after Hershey's death. And they were previously gifted to Hershey by a disabled lawyer and activist, Harriet McBryde Johnson. And so these boots follow a lineage that connects communities of care through this sort of solidarity of disability, even after these people's deaths.

And so we're really interested in concepts like disability lineage, inheritance, or even disabled ancestors, all of which are ideas that have been developed by and in community with disability justice activists and other disabled people like Alice Wong and Stacey Park Milburn and Leah Lakshmi Piepzna-Samarasinha, among many others.

And this reminds us that we are a part of these long, interconnected histories that are shaped by disabled people who came before us. And so such inheritances and lineages offer ways of navigating diagnostic categories, institutional barriers, and systemic violence, as well as ways of building critical solidarities that make it possible to collectivize these risks that we all face so that we can better move together in these broken worlds that we're inhabiting.

Eleanor Drage (28:49)

On the topic of schizophrenia, in the book you explore how, as a diagnostic category, it's understood a little bit differently than it was 50 years ago. So no longer is it organized into subtypes like paranoid and disorganized. Now there is a five-point sliding system for symptom severity that monitors things like hallucinations, delusions, depression, and disorganization.

And I found this interesting because my uncle had schizophrenia, and when he was living in the home, he became unmanageable for my grandfather and my grandmother, and my mum, who was very close in age and was very close to him, and when we went, it was clear that it was the medicine also that was causing these different things. So, in some ways, the illness and the medication were inseparable. It became this pharmacological phenomenon. You couldn't kind of take one away from the other.

So this move in medicine to structure diagnostic categories as sliding scales, and we hear quite a lot, you know, everyone's on the spectrum, what do we take from the element of risk, I guess, that we now have in these different diagnostic categories? And what do we think of the spectrum as a concept, both kind of medicalized and in popular culture?

Anne McGuire (30:10)

So, the case that we were exploring, the case of donor 9623, which Kelly was just talking about, it really hinges on this notion of what we talk about in terms of spectral risk. The idea that disability, or in this case schizophrenia, is no longer perhaps only or even dominantly understood as this kind of discrete category, but rather as a spectrum. So, for a long time, just to give, like, a very brief background, psychiatric diagnosis worked in binary terms. You either kind of met the criteria or you didn't.

But over the past decade or so, and especially since the publication of the DSM-5, we've seen an integration of dimensional metrics that treat mental illness as existing along a continuum. So the question becomes less a question of kind of presence or absence of illness and more kind of to what degree? Where do you fall on the scale between the complete absence of symptoms on the one hand and their most severe manifestation? So many, both within kind of psychiatry and beyond, really are arguing that this blur, this kind of move, risks blurring the line between normal and disordered, raising the question, you know, of whether anyone can claim or understand themselves as fully well anymore.

And, you know, as you kind of started to hint at, Eleanor, this way of thinking has also moved beyond clinical settings. Many people talk about having kind of, quote-unquote, like, a little bit of OCD, or, you know, say things like, "Aren't we all a little autistic?" And despite all this fluidity, dimensional diagnostics still require a threshold, right? A clinical threshold. That is, there is always some point along that spectrum where pathology is understood to begin. And this holds in popular discourse as well. You know, while we might all be, quote-unquote, a little bit autistic, some people live with far greater stakes and consequences of that embodiment and/or diagnosis.

So while this kind of open fluidity of dimensionality may seem to liberate us from older binary distinctions of normal and abnormal, healthy and disordered, it often falls short of that promise, kind of reinscribing rather than undoing the limits of acceptable forms of divergence.

Spectral risk, as you mentioned, also produces this distinct anticipatory kind of understanding of ourselves and others as never quite well, or even as pre-symptomatically ill or asymptomatically ill. And the book explores how these understandings are, among other things, extremely profitable to the biopharmaceutical industries. Kind of this widening of the scope of who is imagined to be unwell impacts who needs therapeutic intervention. And these therapeutic interventions are, like, really wide, right? Like, they can be life-saving medical treatment plans, or they can be Instagram or chatbot therapeutics with dubious research.

So again, in the context of racial capitalist biomedical systems, spectral diagnostics can do this thing that we were talking about earlier, not simply resolving a crisis, but perpetuating it and committing to that perpetuation in the long term for profit. But the critical question that we ask in that chapter is also, like, what else do spectrums do?

So this book really talks about how notions of spectrum and spectral risk can also offer political promise. Yes, you know, the spectrum can fragment experience into individual kind of micro-pathologies, as we've seen, but it also can reveal the many experiences of illness and disability and how they're shared.

So, for example, just like a really concrete, very recent example, I've been dealing with some uncomfortable trade-offs of a new medication for my chronic illness, which helps manage some pain symptoms but leaves me nauseous a lot of the time.

And this isn't the same dilemma that Kelly was describing earlier when she was talking about balancing the benefits of her life-extending treatment with the risk of kidney failure. These kinds of payoffs and trade-offs are very different in scale and play out very differently in our lives. But thinking across these experiences, even if they differ in kind and degree, can really create a powerful opportunity for cross-disability solidarity and forging these solidarities across our various disability experiences, between disabled people, but also between disabled and non-disabled people as well.

This really matters politically, particularly when we're fighting for more habitable, more accessible, and more just worlds for disabled people and kin.

Kelly Fritsch (35:06)

Yeah, just to pick up on that point on access, like, I think spectral risk can also help us see how differences in lived experiences are actually shaped by differences in access. So whether that's, like, access to critical infrastructure, affordable medicines, technologies, but also community, right? Social support, safety systems.

And so how well we live with risk really depends on our access to healthy food, affordable housing, safety from harm, protection from trauma, like I was mentioning before. And things like robust public education systems that are well funded. And so, really, like, collectivizing risk means moving away from this idea that risk lives in particular bodies or particular families, and instead understanding risk as something that's produced through social and material and infrastructural conditions.

It's not just about identifying who is at risk, but to understand that risk fundamentally is distributed, and it's a shared condition. And so this is really necessary, this understanding of collective risk, if we're going to effectively fight against and transform all the different kinds of broken conditions under which we differentially live.

Eleanor Drage (36:20)

Kelly and Anne, thank you so much for joining me today. It's been phenomenal, and I wish you huge success with this brilliant book.

Kelly Fritsch (36:28)

Thanks so much, Eleanor. It was wonderful to be here.

Anne McGuire (36:31)

Thank you for having us.

Sperm banks and palliative care with Kelly and Anne McGuire

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