Massively Disabled 3: Back to the Future with Polio

In the third post of an ongoing monthly series exploring podcasting practice and the medical humanities, Élaina Gauthier-Mamaril reflects on how disabled communities of care share practices and knowledges from polio to COVID.

Content Note: This post includes descriptions of suicidal ideation, particularly in the context of becoming chronically ill during the COVID-19 pandemic.

Logo for the Massively Disabled podcast. A black circle containing the stylised outline of three people is surround by text which wraps around the images and reads 'Massively Disabled: A Long COVID Research Podcast'. The background is a colour gradient background which goes from light green on the left of the logo to light blue on the right. The logo is enclosed by a square black border.
Massively Disabled Podcast Logo. Credit: Élaina Gauthier-Mamaril.

I made Back to the Future with Polio for teen Élaina. I first came to podcasting as a way to reconnect with my philosophical praxis and rethink the “for whom” of it all. Through the framework of Philosophy Casting Call, I challenged myself to seek out and interview other marginalised philosophers in a desperate attempt to seek belonging to an academic environment that I felt was disciplining me into oblivion. And, I’m happy to report, the experiment paid off! In many ways, Massively Disabled would not exist if I hadn’t forded the rapids of Philosophy Casting Call and experienced the camaraderie of my misfit scholarly peers across the globe. If Philosophy Casting Call helped me hone who I am as a philosopher, Massively Disabled witnessed my ‘coming out’ as a disabled philosopher, one who wields concepts, critiques, and strategic voice overs in the service of epistemic justice, and who can speak to teen Élaina and honestly tell her that things will get better.

When I set out to make a long COVID research podcast, my intended audience was disabled and chronically ill people, and disabled scholars in particular. In my last post, I reflected on the importance of creating counter-archives; to leave traces of our disabled lives beyond the reductive confines of medical reports. If you have listened to episode 3, you might have noticed that three out of my four interviewees have spent a considerable amount of time in academia. This was no accident. On one hand, I wanted to trouble the imagined separation between the knower and the known, between the scholarly expert and the person with lived experience of illness and disability. On the other hand, I was very consciously crafting a mini-fantasy world: 29 minutes in which I could feature a version of the intergenerational, cross-disability, and international community that I wish I had access to when I was growing up ill. I was speaking to my past self and to all the newly and not-so-newly disabled people who need to hear: You are not alone.

We Need Crip Doulas

The late crip ancestor Stacey Park Millburn spoke of crip doulas, of ‘elders’ that accompany those newly initiated into disabled reality through their transition. This kind of mutual support framework is capable of embracing a wide range of emotions and disability “journeys”, including, but not limited to, the recovery arcs that are pervasive in mainstream narratives about illness and disability. Crip doulas have been around the block and they can share tips and hacks, but they can also deeply resonate with the difficult and complex feelings that accompany rebirth into disabled life. This kind of peer support model is not new. You may be familiar with the sponsorship system in Alcoholics Anonymous or the culture of “drag mothers” in Black American queer communities. Doulas are also present in alternative birthing practices, as they accompany a pregnant person through the emotional and pragmatic transition from pre- to post-partum. Mostly, these doulas have given birth themselves, but not always. Doulaship is about providing personal guidance through a new world, whether that be pregnancy, abortion, or death. Doulas link us to the past and the future as a witness to a meaningful transition in our lives.

Disabled people deserve doulas. In a society that views disability as a net loss and chronic illness as a tragedy (that we may or may not have brought on ourselves, but that is another kettle of fish), crip doulas are here to welcome you into disability culture. It won’t make everything better; it’s not a panacea to the physical and psychic pain you are feeling, but, if nothing else, it is a soft whisper telling you that life is still worth living. When your family and your friends are frustrated with your new access needs, you can find people who understand. When you struggle with the decision to disclose your condition at work or when dating, you can find advice and support from people who have been there too. Crip doulas can come in many forms. Mine have mostly been online, through their digital activism and then through personal connections. I wish all disabled people could have in person crip doulas, but that is just not possible all the time. In the meantime, I’m going to put out content like Back to the Future with Polio.

The Both/And of Grief and Critique

In the episode, I present the concept of DALYs (Disability-Adjusted Life Years) and offer a brief critique. I would like to expand on that critique here while placing it in tension with the grief and trauma involved in becoming disabled that Frances Quinn spoke of in the episode. DALYs, as well as its siblings Quality-Adjusted Life Years (QALYs) and Health-Adjusted Life Years (HALYs) are a population-level measurement taken to assess the average effect a disease and/or its treatment will have on life expectancy. For example, if someone is diagnosed with breast cancer, QALY databases can give an estimate of life expectancy for each treatment option, or in the case no treatment is used. In the case of DALYs, the presence of a disabling condition is used to calculate a deficit in life expectancy. The main argument against using DALYs as a measure of the burden of health is that it reduces disability to a lack or a state of deprivation, which in turn reinforces the perceived legitimacy of the medical model of disability and its close cousin, the charity model. This kind of investment in a solely negative view of the role of disability in the human experience yields material realities that range from isolating disabled individuals from each other and erasing disabled culture to removing ventilators from disabled people to give them to ‘healthy’ patients admitted to hospital with a COVID-19 infection (Stramondo 2021). In the latter case, disabled people were categorised as a waste of resources because of their reduced likelihood of being restored to ‘normal’ (read: non-disabled) respiratory function. In a time of crisis, not only were disabled people deprioritised when it came to allocating ventilators, but those who already used one as part of their daily, non-pandemic-related life had them taken away. Stramondo (2021) argues convincingly that these “hard choices” in times of crisis are not inevitable, but rather they are the result of a system that views disability as a lack and disabled people as less human.

A black and white photograph focussed on a pair of hands in the foreground. One hand squeezes a drop of polio vaccine from a tube onto a sugar cube which sits on a spoon being held by the other hand. Out of focus in the background of the shot, two children sit looking at the spoon.
Oral polio vaccine. Source: Wellcome Collection.

DALYs are also not a very useful way of capturing ongoing chronic care needs. If disability is seen as a one-time tragedy (e.g. contracting a virus or having a severe accident), then it makes sense to try and prevent future disablements. But, as Frances points out in the podcast episode with the “zero DALY” grade given to polio (van Lier et al. 2016), the absence of new cases misrepresents the burden of disease landscape. If we come back to COVID-19, it is one thing to note that rates of hospitalisations and deaths have dropped and another to claim that COVID-19 does not present a burden of disease. The millions of people living with long-COVID are a testament to the pressing need for a revolution overthrowing supremacy of the acute-focused healthcare infrastructure that fails the chronically ill.

Still, a robust critique of the medical model and the injustices it breeds cannot turn away from the very real grief many people feel upon becoming disabled. This grief may accompany a before/after split, when notions of identity, personality, and place in the universe are radically challenged. This is the kind of grief I saw the most of from long-haulers on social media: cries of anger and despair at feeling torn apart, at being alive while watching your old self die, grasping at any potion or spell that could maybe, perhaps, please God, resuscitate you. Some people expressed their suicidal ideation, explaining that they no longer felt like productive members of society. This was particularly difficult for me to read as someone who lives with suicidal ideation, but it is vital for us to acknowledge all shades of grief, no matter how painful and discomforting they may be.

This being said, when, unprompted, Frances brought up the trauma associated with grieving a future self as a child growing up ill, I knew that I wanted to make this an important part of the episode. There are thousands of children and teens with long-COVID who are grieving who they were going to be and my research and interviews on polio and post-polio really illuminated the need to address the concept of grieving the future. Both Ruth and Frances communicated to me that, growing up in the 1950s and 60s, the mantra was “use it or lose it” and that the best thing for polio patients was to work through the pain and discomfort to achieve normative lives. As a result, people living with polio and post-polio didn’t usually have a forum to speak about their experiences. There is no good reason for this to be the case for young people living with long COVID today. Unfortunately, talking about COVID is increasingly becoming a social faux-pas, eliciting dismissal and hostility from a society that has not processed its collective pandemic-related trauma. Once more, disabled people are portrayed as being difficult fearmongers for bringing up their experiences and concerns and we have to be careful to not let disablist attitudes further marginalise people with long COVID. It is up to us, collectively, to create spaces for the crip doulas to do their work.

You can listen to “Back to the Future with Polio” here or wherever you can find podcasts.

You can read the transcripts to every episode at www.massivelydisabled.com

You can follow Massively Disabled on Instagram and Twitter @massdisabledpod

You can support the podcast’s composer, Morgan Kluck-Keil, on Bandcamp.

Massively Disabled was produced with the support of the Centre for Biomedicine, Self and Society, Usher Institute, at the University of Edinburgh.

About the Author      

Élaina is a crip Filipinx philosopher of disability based in Scotland. She holds a PhD in philosophy from the University of Aberdeen and is currently a research associate for iHuman’s Wellcome Anti-ableist Research Culture project at the University of Sheffield. Massively Disabled is her first research podcast, but she also produces Philosophy Casting Call, Bookshelf Remix, and Women of Questionable Morals.

References

Stramondo, Joseph A. and Philosophy Documentation Center. 2021. ‘Tragic Choices: Disability, Triage, and Equity Amidst a Global Pandemic’. The Journal of Philosophy of Disability 1: 201–10. https://doi.org/10.5840/jpd20219206.

Van Lier, Alies, Scott A. McDonald, Martijn Bouwknegt, EPI group, Mirjam E. Kretzschmar, Arie H. Havelaar, Marie-Josée J. Mangen, Jacco Wallinga, and Hester E. De Melker. 2016. ‘Disease Burden of 32 Infectious Diseases in the Netherlands, 2007-2011’. Edited by Luisa Gregori. PLOS ONE 11 (4): e0153106. https://doi.org/10.1371/journal.pone.0153106.

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