“Unhealthy” Bodyminds: a Response to 23Andme's Health + Ancestry

Fat Studies An Interdisciplinary Journal of Body Weight and Society

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Re-Imagining Futurity for Fat, Disabled and “unhealthy” Bodyminds: A Response to 23andMe’s Health + Ancestry Genetic Testing Kits

Sav Schlauderaff

To cite this article: Sav Schlauderaff (2019): Re-Imagining Futurity for Fat, Disabled and “unhealthy” Bodyminds: A Response to 23andMe’s Health + Ancestry Genetic Testing Kits, Fat Studies, DOI: 10.1080/21604851.2019.1651124 To link to this article: https://doi.org/10.1080/21604851.2019.1651124

Published online: 08 Aug 2019.

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Re-Imagining Futurity for Fat, Disabled and “unhealthy” Bodyminds: A Response to 23andMe’s Health + Ancestry Genetic Testing Kits Sav Schlauderaff Gender and Women's Studies, University of Arizona, Tucson, AZ, USA

ABSTRACT KEYWORDS In the era of rising biotech corporations integrating into the 23andMe; DTC genetic medical landscape, how can a future for non-normative body- testing; genetic weight loss; minds be reimagined? The biotech company 23andMe sells the care network; cripping idea of controlling, curing and knowing one’s bodymind and biotech biological future on a genetic level through their Health + Ancestry kits, research, and various new products and tests for weight loss. 23andMe plays into the pre-existing desires to erase fat, disabled, and “unhealthy” bodyminds from the future. This article explores the impact of 23andMe’s Health + Ancestry kit and research initiatives on fat, disabled and “unhealthy” bodyminds to question which bodyminds are understood as deserving empowerment and which are marked for erasure – and moreover, who is benefiting from this. This is accomplished through outlining the roles of technology, new media, social media influencers, researchers, and medical professionals in marketing and normalizing direct-to-consumer (DTC) genetic testing kits and self-surveillance. Further, this article asks how to imagine alternative means of survival through crip care networks, coalition building among fat, disabled and “unhealthy” bodyminds, and a re-imagining of biotech products through crip technoscience.

What is 23andMe “Live in the Know,”“Welcome to You,”“23 pairs of Chromosomes. One Unique You,”“Genetics just got personal” (23andMe 2019c). These are the trademark slogans of the ever-growing biotech company 23andMe, which markets the idea of discovering one’s “true” self through their direct-to- consumer (DTC) genetic testing kits. 23andMe is a private biotech company located in Mountain View, California, co-founded in 2006 by Linda Avey, Paul Cusenza, and Anne Wojcicki, the former wife of Google co-founder Sergey Brin and the sister of Susan Wojcicki, the CEO of YouTube. However, both Avey and Cusenza have since left the company and Anne Wojcicki is currently its chief executive officer. Since 2006, the company has genotyped

over 5 million people worldwide (23andMe 2019c), which they hope to eventually increase to 10 million (Hayden 2017). DTC genetic testing has become increasingly more affordable, dropping from the $500 million it cost to sequence the first human genome (Roberts 2011) to 23andMe’s current $199 price tag for their Health + Ancestry kit, which is frequently discounted for holidays (23andMe 2019c). This decrease in price has coincided with the media obsession with personalized medicine, improved health, weight loss products, and gene editing to create a product that sells consumers information about their probability of developing potential future diseases, how their bodies and health compare to others, alongside “fun” genetic traits1. 23andMe offers two DTC kits, an Ancestry Kit and a Health + Ancestry Kit, in addition to their most recent research on weight loss. There is vitally important work about ancestry kits and gene sequencing, particularly from critical race, indigenous, and surveillance studies from writers such as Roberts (2011), Washington (2006), TallBear (2013), Samuels (2014), and Nelson (2016). Moreover, there have been critiques of these kits in the media, for example, about Elizabeth Warren’s use of ancestry testing to determine her alleged Cherokee heritage (TallBear 2019), to reports about namely white customers “discovering” Black or Indigenous ancestry and trying to use this new information for personal gain (Jaschik 2019; Roberts 2011; Zhang 2018). However, I believe there is a specific need for fat studies, disability studies and overall, critical health studies perspectives – in addition to work from critical race and ethnic studies perspectives – to analyze the DTC “health” kits that have flooded the market in the past decade. This is necessary to fully assess the impact of the “health” tests through how healthy/unhealthy maps onto BIPOC2, fat and disabled bodyminds3, and to analyze who is present in 23andMe’s commercial advertising versus whose information is extracted for research. In 23andMe’s Ancestry Report, customers receive over 35 reports with over 1000 regions, ancestry composition, haplogroups,4 Neanderthal ancestry, and their “DNA Family.” For the Health + Ancestry service, customers additionally receive reports on 10+ Health Predisposition Reports, 5+ Wellness reports that include customers’“Genetic Weight” and “Saturated Fat and Weight” results, 40+ Carrier status reports, and 30+ Traits telling customers about their urine odor after eating asparagus, if they have an aversion to cilantro, and what time they are likely to wake up – to name a few examples (23andMe 2019c). While some of the “traits” information seems innocuous, the danger comes from the Health Predisposition and Carrier status reports and their newer advances into weight loss studies. For example, with the new Type 2 Diabetes reports (23andMe 2019g) – made possible by multiple genetic weight and type 2 diabetes studies (23andMe 2013a, 2017h, 2017b, 2018d, 2019d) and customers opting in to FAT STUDIES 3

participate in research5 – 23andMe does not test for every possible genetic variant, which some customers may not be aware of. Therefore, customers could take their “negative/undetected” result to mean that they won’t develop type 2 diabetes, or may take their “positive/detected” result as a sealed fate. These results are simplistic; the development of type 2 diabetes is complex and due to multiple factors beyond inherited genes, such as epigenetics6 and environmental factors,7 which they now note on their website under “Our Science” (23andMe 2019a). The lack of automatically provided support and information has been a central ethical and legal question among researchers, medical providers and lawmakers since at-home kits came out more than a decade ago. Currently, it should be noted that 23andMe states in fine print on their website that these results should not be taken as definitive and they should be discussed with health-care providers (23andMe 2019c). As a disabled8, chronically ill, queer and trans individual who is continu- ally working to recover from anorexia, this is a topic that impacts me personally, and, academically speaking, my background in disability studies, genetics, molecular biology, and gender and women’s studies situates me at the crossroads with DTC genetic testing kits. This is what pushed me to start my research on 23andMe (Schlauderaff 2018), and what continues to push me to write about the implications of societal investments in “health” and how that translates to which bodyminds are imagined as part of a “better future.” These discussions are important, because the ability to manage one’s health at the genetic level can extend to increased (self) surveillance and policing reproduction – actions that have deep roots in eugenics, ableism, fatphobia, racism, anti-Blackness, colonialism, xenophobia, anti-Semitism, homophobia, transphobia, sexism, ageism and classism. Therefore, this article focuses on the policing, punishing, and extraction of information from non-normative bodyminds, in contrast to 23andMe’s rhetoric that favors normative bodyminds and the continued representation of normative bodyminds for the Health + Ancestry kits. This contrast begs the question, who is 23andMe marketing to, and how does that differ from who they target for research purposes? What are the impacts of commodify- ing, privatizing, and normalizing of genetic testing? Who is playing a role in the normalization of DTC genetic testing kits? Who does this normalization benefit? Who is allowed to feel empowered by their DTC kits and who is being told that their bodyminds should be erased in order to create a better future? Perhaps more importantly, why are those who fall on the “unhealthy” side of the binary opting to purchase these kits and participate in research? What are the options within this neoliberal healthcare landscape that is increasingly personalized, privatized and selling the idea that self-surveillance is beneficial? This article asks readers to imagine alternative means of survival and to re-think the ways to relate to and understand hegemonic narratives of 4 S. SCHLAUDERAFF

“health” within the expanding reach of these biotech products. What can be learned through coalition building among fat, disabled and BIPOC bodyminds to re-work these technologies – decolonize, crip and queer these technologies – in the face of biotech futures set on genetic determinism and surveillance? How can support networks and crip care webs push back against this? How can survival and health be re-imagined for disabled, fat, “unhealthy” bodyminds?

A note on terminology: examining health through fat studies and disability studies It is vitally important that fat studies and disability studies continue to intersect and intentionally work together to address the monolith of “health” and the medical model of disability, and within this essay, to address 23andMe’s existence within the medical model and the medical-industrial complex9. 23andMe has commodified this desire for health through their DTC kits. In the words of Anne Wojcicki “It’s our responsibility to help people figure out how to prevent developing a disease or to find a cure for it.” (23andMe 2017g). The medical model frames disability as solely a medical problem that needs to be cured or fixed because it is a result of a defect in the individual (Goodley 2011). As Kafer (2013) further explains, the medical model “frames atypical bodies and minds as deviant, pathological, and defective, best understood and addressed in medical terms … Solving the problem of disability, then, means correcting, normalizing, or eliminating the pathological individual, rendering a medical approach to disability the only appropriate approach” (p. 5). The medical model and desire for cure are reflected in 23andMe’s marketing for the Health + Ancestry kits; for example, in “23andMe: This is Lupus” and “23andMe: This is Parkinson’s” the actors/customers, Mary and Claudia, respectively, discuss the amount of medications they need to take, how and when they received their diagnoses, how the diagnoses negatively impacted their lives while simultaneously emphasizing the need to “stay positive” (23andMe 2016a, 1:09, 2016a, 1:58, 2016b, 0: 39), and proactively get involved with research to help “future generations” (23andMe 2016b,2: 00). These desires for normalcy10, or what McRuer (2006) named “compulsory able-bodiedness” and Kafer (2013) named “compulsory able- mindedness,” lead to harmful measures taken to achieve this normalcy, often through eradication, imprisonment, institutionalization, sterilization, and “cure” as Clare (2017) extensively covers in his text Brilliant Imperfection. Therefore, being disabled, unhealthy, ill or unwell are all deemed undesirable categories that should be “cured” at all costs, as it is the only culturally acceptable and recognizable future (Kafer 2013). The aim is to “fight for a cure.” 23andMe’s “stories” emphasize the medical model FAT STUDIES 5

through pathologization and representing disability only as something to cure. These same systems and beliefs are enacted upon fat bodies, framing fatness as “deviant,”“undesirable,” non-normative, and something to “cure” or eliminate. Gender, race, and disability studies scholar Schalk (2013) have noted this overlap in her essay “Coming to Claim Crip: Disidentification with/in Disability Studies.” Schalk draws upon both Alison Kafer and Robert McRuer’s calls to open up the term crip11 outside of disability for coalitional possibilities12. In relation to fatness and disability, Schalk (2013) writes:

both fatness and disability are highly pathologized, viewed as medical and/or health issues located primarily in the failed body/mind/desire/behavior of the individual ….[disability and fatness are] medical/health problems which ought to be ‘fixed’ or ‘cured’ even if such ‘fixing’ goes against the wishes of the person and/ or does not improve overall health. (para 21) Schalk is not alone in highlighting the intertwined realities and shared histories of fat, disabled, Black, POC, queer, and/or poor/working class bodyminds (Bailey and Mobley 2018; Bell 2006, 2010; Clare 2017; Piepzna- Samarasinha 2018; Schweik 2009). In particular, the overlap between fat studies and disability studies has been explicitly noted by scholars like Mollow (2015) and Herndon (2002). These overlaps where bodyminds are pathologized through the medical model can become a space for coalition building among fat, disabled, and BIPOC folks. To break out of the medical model, out of pathologizing, and out of a desire for diagnosing requires re- working/re-imagining technologies centering genetic determinism, and systems set on labeling bodyminds for deviance from the norm. This labeling often works to separate people based on “diagnosis,” yet can be traced back to the binary of who is healthy/unhealthy under a white supremacist, ableist, fatphobic society. There is a need to reject and disidentify with this rhetoric together across our different labels/diagnoses.

Scientific, feminist and fun! Representation and rhetoric of 23andMe 23andMe over the past 13 years has become the leading consumer genetics and research company, as noted on their websites (23andMe 2019b, 2019c). Their success can be attributed to their branding as scientific, feminist and fun13 (23andMe 2017c, 2017d, 2017e, 2018g; Gitschier 2015; Hayden 2017; Schlauderaff 2018), their ability to stay relevant through social media and influencers, the personalization of their company, and the support of “professionals” such as medical professionals, researchers, and organizations such as the FDA (23andMe 2018f; AnneW 2013; “FDA approves”, 2015; FDA, 2017; LindaA, 2008; Magnus, Cho, and Cook-Deegan 2009). Each of these 6 S. SCHLAUDERAFF

moving parts have given 23andMe relevancy in various markets and have worked to normalize their products on a global scale. 23andMe is active across their social media platforms, particularly Twitter, Instagram and YouTube. On YouTube, 23andMe has produced several “story” formatted advertisements for their Health + Ancestry kits (23andMe 2016a, 2016b, 2016e, 2018b, 2018c, 2018h, 2018i, 2018j, 2018k). From these “stories,” seven out of the ten feature white14, cisgender, heterosexual women with scripts that center their family – to date Claudia (23andMe 2016b) is the only person of color featured, and her video is no longer listed on their website (23andMe 2019c). Further, all of the commercials have shots of the customers exercising, preparing “healthy” foods, and walking in nature – tying the 23andMe kits to an overall “healthy” lifestyle and marketing desire for weight loss and thinness. Building off the narrow representation in these stories, the rhetoric used in each video tells the same story of how the kits helped the customer feel prepared and in control of their health, helped them overcome a disease, a disability or fatness, and each customer stresses the importance of the future (their family) and a desire for cure for future generations (Schlauderaff 2018). These repetitive state- ments and sentiments place disability, fatness, and being “unhealthy” in opposition to a “better future.” 23andMe has gained notoriety and recognition through influencers and content creators on platforms like YouTube. To understand the importance of the use of influencers to promote 23andMe kits, particularly on YouTube, one just needs to go to 23andMe’s channel to see their playlist “YouTubers Take the 23andMe Test!” For example, BuzzFeedVideo, a major global media company, has made several YouTube videos of their workers spitting into tubes and going over their results on camera on their main channels (BuzzFeed News, 2017; BuzzFeed Video, 2018), and on their affiliated channels like Ladylike (2017), Like (2016, 2018) and the now independent channel and company the Try Guys (BuzzFeedVideo 2017). Other popular and varied channels have made videos using and/or promoting the 23andMe DTC kits (Elainey 2017; Howell 2017; Witton 2019; IISuperwomanII 2018; Jacksepticeye 2017; Graceffa 2017; Burke 2019; Oakley 2018). Additionally, more “science”-based channels such as AsapSCIENCE (2018) and Seeker (2017) have made videos that both promote the product and provide “scientific” and “professional” information about 23andMe – and are a way to market to their young audiences that “love science” like Sarah claims in her advertisement (23andMe 2018b, 1: 11). Between these creators and channels, they can reach over 100 million viewers15. This marketing is successful because “Ultimately, this provides 23andMe with a seal of approval and access to millions of new potential consumers by piggybacking off online influencers who have already built a brand and trust with their followers” (Schlauderaff 2018, 66). Therefore, even if potential consumers don’t see FAT STUDIES 7

23andMe’s “story” advertisements, they likely will see the advertisements made by influencers they follow – and further, if they watch a video about, or sponsored by, 23andMe they will likely receive targeted advertisements from 23andMe in the future. 23andMe has furthered the personalization of their brand by asking customers to share their #23andMeStory with the company across social media platforms, and by including the faces and information about the researchers that supposedly work for the company (23andMe 2019c). The inclusion of smiling faces of researchers and everyday customers can aid in making 23andMe feel approachable, trustworthy, accurate, and a fun activity customers can do with their friends and family. This same branding has been continued and amplified in their latest projects, such as, the literal personi- fication of selected gene variants they test for called “Meet Your GenesSM” (23andMe 2019f) and the twenty-five short documentaries they made in conjunction with Tribeca Studios called “IDENTITY” regarding their Ancestry testing kits (23andMe 2019h). Thus, 23andMe’s commercials, online presence, and ever-expanding research ventures continue to present 23andMe as a company that is scientific, feminist and fun.

Selling control and self-surveillance: the new fit biocitizen 23andMe has been researching and producing content about weight loss and its potential ties to genetics since 2013. This can be noted in a blogpost from January 30, 2013 entitled “Your Lifestyle, Your Health, Your Genes” which is full of fatphobic comments such as “To the fortunate few with lower-than- average genetic risks of all the conditions above [type 2 diabetes, coronary heart disease or venous thromboembolism], don’t grab that donut yet” and “Unfortunately, health isn’t an even playing field. Just as some people have genetic variants associated with lower than average risk for disease, some are born with skinny genes (and can wear skinny jeans)” (23andMe 2013a). These fatphobic comments by 23andMe are masked within the rhetoric of “health” and “science.” Further, this blogpost includes an image of a thin, blonde, white woman smiling at the camera while measuring her weight on a scale – playing into sexist pressures for women to conform to the “ideal” thin and fit body type. This integration and overall acceptance of biotech products into the larger fitness and health-care markets highlight the under- lying desire to control, cure or “manage” bodyminds that stray outside the white, cisgender, heterosexual, thin, ablebodied/ableminded ideal. In 2017, 23andMe published a genetic weight report, which compiled data from over 600,000 participants, and opened by asking “have you ever wondered if it’s your genes keeping you from fitting into your skinny jeans?” (23andMe 2017b). Going into 2018, their marketing campaign doubled down on becoming a “healthier you” by launching a more 8 S. SCHLAUDERAFF

targeted genetic weight loss research initiative involving 100,000 participants (23andMe 2017h). In their blogpost about the launch, they write that it is “just in time for New Year’sresolutions” and the aim of the study is to study behavioral weight loss to help 23andMe “pave the way towards more personalized lifestyle recommendations” (23andMe 2017h). In 2018, 23andMe published the results of their Weight Loss Intervention Study, where the company notified users if they had a specific genotype that could increase their BMI if they had diets high in saturated fat. From this, 23andMe tracked the potential diet changes of these contacted customers, where 20% answered that they started to change what they ate (23andMe 2018d). Most recently, at the start of 2019 23andMe launched their collaboration with Lark16 to create an A.I. “digital health coach” that offers a Wellness Program for $19.99 per month for weight loss, and a Diabetes Prevention Program for type 2 diabetes. 23andMe presents this as an overwhelmingly positive move forward, because it can “nudge people toward their health goals” and help customers make “lifestyle changes” (23andMe 2019d). This study aligns with the approval of 23andMe’snew genetic report on type 2 diabetes that was announced on March 10, 2019. This report was developed using more than 2.5 million 23andMe customers who opted in for research to identify common genetic variants. In the announcement post, much like the language used in the other weight loss reports, they emphasize “health” and the need for “lifestyle changes” to prevent type 2 diabetes (23andMe 2019g). Building off this latest announcement, users can sync their FitBit data with the Lark app (Lark 2019b). There have been research and media articles written about FitBit surrounding concerns with surveillance, privacy, and selling user’s data (Chung 2017; Esmonde and Jette 2018; Martin 2018; Rowland 2019). However, this is more than surveillance or invasion of personal privacy by biotech companies or employers, because these technologies like FitBit, and now 23andMe with the Lark collaboration, normalize the desire for self-surveillance. Julie Passanante Elman in her article “‘Find Your Fit’: Wearable technology and the cultural politics of disability,” argues “…wearables promise greater control over health, safety, and emotional well-being through intimate data gathering. The devices encourage constant but playful self-surveillance; the constant self-enhancement they encourage also offers an endless interface of self-diagnosis” (2018, 3761). Dorothy Roberts additionally argues that, “…making citizens responsible for managing their health at the genetic level reflects the shift of responsibility for public welfare from the state to the private realms of market and family … Instead the government and corporate sectors rely on the sense of obligation individuals feel to control their own health at the genetic level” (2011, 220–221). The obligation to self-surveil health has become normalized and is seen as “depoliticized medical consumption” and a personal/private choice FAT STUDIES 9

for biocitizens (Benjamin 2013,50–51). Health has become commodified through companies like 23andMe as a kit to empower and better oneself – through controlling, curing, or managing fatness, disability, and disease at an individual genetic level. 23andMe has yet to create a “story” style advertisement about their new weight loss17 research or about their recent tests for type 2 diabetes – but I want to reiterate that none of the “Health” advertisements have featured someone who identifies as disabled or who frames their diagnosis outside the medical model. However, this lack of targeted advertising has not diminished the desire by customers for weight loss information – noted through online comments by customers and by 23andMe (23andMe 2017h). This desire for genetic weight loss information is supported by the sheer number of other DTC genetic testing kits that focus on weight loss, nutrition, and working out: Orig3n, DNAfit, Fitness Genes, Healthy Weight DNA Insight, Helix DNA, and HomeDNA Healthy Weight, to name a few. Thus, the normalization of self-surveillance through “health”-related biotech, in addition to 23andMe’s recognizable name and brand, supports consumer desires for weight loss information and products.

Empowerment or extraction? Empowerment is a key phrase used by 23andMe in their advertisements (23andMe 2018b, 2018c), blog posts “Empower the People” (23andMe 2014), “A Major Milestone in Consumer Health Empowerment” (2018e), social media posts (2013b; 2017a), and interviews with Anne Wojcicki where she has stated:

The mission is about trying to change health care through empowering you. I think there is a whole cascade of effects that will come if we can actually empower you to have more ownership. My hypothesis is that people are not proactive about their health because they don’t feel they are empowered. If you are treated like a child all day – just look at the communist system – you are not really inspired to take ownership. I want to change that. (Gitschier 2015, 9, emphasis added)

Through this, 23andMe has built an image centering consumer choice that speaks to desires for autonomy, agency and individualism within a healthcare system that doesn’t work for the patient and isn’t financially accessible for many people in the United States. However, there are multiple hidden messages behind the feel-good phrase of empowerment. Wojcicki is fully embracing a neoliberal privatized future that provides the customer with “choices” to take personal ownership, which she also contrasts with her negative comment toward “the communist system” broadly. However, who gets counted as a customer and who has the option to make choices for their 10 S. SCHLAUDERAFF

“health”? Who is forced to make choices to become healthy, and who is never given these choices at all? Within the imagery of 23andMe’s “health” commercials, the customer is someone who is young, fit, and otherwise healthy and wants to prevent themselves from becoming disabled or fat in the future. Therefore, these commercials are not created for fat, disabled, or “unhealthy” people, even when the research that located these genetic variants was made possible because of these non-normative bodyminds. However, 23andMe advertises to non-normative people for “scientific research” and to diversify their database to provide more accurate results for their customers. This can be seen in their recent calls for customers to enroll in their genetic weight loss studies (23andMe 2017b, 2017h, 2018d, 2019d, 2019g), their studies on depression and bipolar disorder (23andMe 2017f; Abassi 2017; Hayden 2017; Mullins and Lewis 2017), and their calls for more customers from Africa and customers who are Indigenous to contribute their DNA (23andMe 2016c, 2016d, 2019e). These groups are represented in research calls, not as customers, unless it is to push for “curing” their own bodyminds. This extraction of data from marginalized and historically underrepresented populations isn’t unique to 23andMe; it has been commonplace in research for decades. As Indigenous scholar Linda Tuhiwai Smith writes in Decolonizing Methodologies: Research and Indigenous Peoples “The search is still on for the elixir of life, no longer gold this time but DNA, cures for Western diseases, and the other ways of finding enlightenment and meaning” (2012, 102, emphasis added). Further, as scholars Roberts (2011), Nelson (2016), Washington (2006), Snorton (2017), and Chavez-Garcia (2012) have extensively documented, Black, Indigenous and Latinx people have always been targeted and abused by medical and scientific researchers – especially when race overlaps with disability, illness, fatness, poverty, incarceration, age, transness, and gender. Therefore, none of this is “new” news; it is simply the transformation of colonization and the continued targeting of vulnerable peoples. The distinction I am aiming to make between bodyminds selected for extraction versus bodyminds able to access empowerment as customers isn’t a clear-cut binary. Fat, disabled, and “unhealthy” people have chosen to purchase the Health + Ancestry kit, but the rhetoric used in the advertisement “stories” is concretely situated within the medical model that desires to “cure” these consumers of their fatness and diagnoses. Customers and research participants are still being sold a curative future as the only possible and beneficial option. These desires to “control” ones bodymind (read “cure,” read “eradicate” fatness, disability, and unhealthiness) are always future- gazing enterprises, and these utopian imaginations never include the “abnormal.” Is there empowerment in participating in one’s own erasure? Can one become empowered through self-surveillance and monitoring? In this “better FAT STUDIES 11

future” where customers know all about themselves and their “health” down to the genetic level, who is there? What parts of themselves did they, or could they, give up to make it there? Did they make enough of the “right” choices? Did they make these choices themselves or were they pressured to regulate, control, and “correct” their impairments? Or did they try to opt out? Is this, or has this really ever been a choice? Can a different future be re-imagined? Can care networks be created for one another, for those who are labeled abnormal and undesirable?

Recreational genetics and re-imagining “health”: the future is complicated Is there a way to opt out? And is there an ethical and safe way to opt in? As someone who is chronically ill, has chronic pain, has multiple disabilities, and who sees multiple doctors every month – there is an innate desire for me to know what is causing all of this pain. That perhaps if I took the testing into my own hands, like Anne Wojcicki describes, I could find the answers written in my genes. Because doctors’ visits to find answers are a slow, painful, upsetting, draining, expensive process where I am always advocating for and defending myself and the knowledge I have of my own bodymindspirit18. For people of color, for women, for those who look non- normative (e.g., who are queer, trans, and/or fat), doctors aren’t likely to believe the pain or symptoms. Many are pushed into (potentially risky) alternative health-care options. All of this can make an individual decision, like choosing to take an at-home genetic test, seem like an attractive option. And is that bad? Or wrong? This is complicated, a brilliant imperfection as Clare (2017) names it, because I have certain diagnoses and impairments I would want “cured” because they cause me too much pain, and others that I would never want to get rid of because they have provided me with community and a very specific lens with which I view the world that I can write/theorize/create from. So, how can I move forward in this uncertain, complicated, and messy future? These conversations are urgent, as disability justice activist, researcher and writer Alice Wong states in her talk “Resisting Ableism: Disabled People and Human Gene Editing,” one of the main arguments for human gene editing is the elimination of genetic mutations or conditions – and thus, certain disabled people. Wong argues that this is concerning because disabled people have been left out of the conversation, when “All of us should question and engage in debates on the social and ethical implications of this technology on humanity and the future” (Stanford, 2017). These technological decisions to supposedly improve the future and improve “health” don’t include “unhealthy” people, as Benjamin writes in People’s Science, “…the United States lags far behind the participatory mechanisms well underway outside of 12 S. SCHLAUDERAFF

the country” (2013, 10). In what ways can fat and disabled people infiltrate these technologies? In what ways can they become scyborgs. la paperson in A Third University is Possible, writes about the importance of the scyborg, “composed of s + cyborg – is a queer turn of word that I offer to you to name the structural agency of persons who have picked up colonial technologies and reassembled them to decolonizing purposes” (2017, xiv). The aspect of la paperson’s short text I want to focus on is the relation of the scyborg to colonizing technologies. They write:

Figure out how technologies operate. Use a wrench. Technologies can be disrupted and reorganized – at least for a machine cycle. Rather than thinking of ourselves as just subjects of those technologies, think about how we are the drones, the explosives, the toxified, the operative parts of those technologies – and ideally, how we might operate on ourselves and other technologies and turn these gears into decolonizing operations … Attach a pace maker to the heart of those machines you hate; make it pump for your decolonizing enterprise; let it tick its own countdown. Ask how, and how otherwise, of the colonizing machines. Even when they are dangerous. (2017, 24) This call to not cast away dangerous technologies, and later what they refer to as “dirty” technologies (p. 69), to understand the ability of technologies to be re-worked and re-wired, can be applied to genetic testing and research. To survive within a neoliberal health-care system in the face of expanding biotech companies and products like 23andMe, and within a medical model that desires to pathologize and “cure”–scyborgs need crip technoscience. The expansive reach of crip technoscience is explored by editors Kelly Fritsch, Aimi Hamraie, Mara Mills and David Serlin in their 2019 special issue by the same name. This issue engages debates around “digital and emerging technologies, treatments, risk, and practices of access, design, health, and enhancement” (Fritsch et. al, 2019, pp. 1–2). They argue that crip technoscience “engages with rather than eschews the relationships, activisms, and products of engineering, design, and other technoscientific practices” (p. 2). Crip technoscience, as well as la paperson’s “scyborg,” can help the critical engagement with products like 23andMe’s DTC kits through crip ways of “knowing-making”–to borrow a term from Hamraie and Fritsch (2019). Therefore, while 23andMe may be creating technologies that are harmful, such as dieting and weight loss products, they may also be creating technologies that could save consumers, such as their tests for specific kinds of cancer that can be accessed without the approval of a doctor or an insurance company. As Eli Clare and Hamraie and Fritsch write, engaging with “cure” and engaging with crip technoscience lands us in “a knot of contradictions. Cure saves lives; cure manipulates lives; cure prioritizes some lives over others; cure makes profits; cure justifies violence; cure promises resolution to body-mind loss” (Clare 2017, xvi) and this work FAT STUDIES 13

is “powerful, messy, non-innocent, contradictory, and nevertheless crucial” (Hamraie and Fritsch 2019, 1). So, “Step out and let cure be the contradictory mess it is” (Clare 2017, 183). Perhaps there are ways to access these knowl- edges without being targeted or exploited for the benefit of biotech and pharmaceutical companies. Perhaps solutions lie in coalition building and crip care networks. la paperson reminds the reader that scyborg is not an identity, it is an assemblage in connection with others – human, more-than-human (to utilize this term from Indigenous studies), and machine – always. This understanding of bodymindspirits as interconnected has been explored by writers and theorists like the frequent collaborators Anzaldúa (2015)andKeating(2007), as well as within the disability justice movement, and activist work that utilizes community care. These concepts are central to Leah Lakshmi Piepzna-Samarasinha’s book Care Work: Dreaming Disability Justice, full of essays about her experiences creating and doing care work especially for/with other QTBIPOC19 crips. Piepzna-Samarasinha presents their successes and failures, and reminds readers that even those who may seem “like us” won’t inherently understand the needs of others (2018, 57). That if it is only disabled folks always helping other disabled folks,theresultwillbeburnout.Piepzna-Samarasinha, like Schalk (2013), Kafer (2013)andClare(2017), proposes the importance of coalition building across different identities, and creating work that highlights the intersections among fat, disabled, queer, crip, BIPOC – as well as the created differences within these groups caused by medical pathologization, and genetic and biological determinism. Ways to integrate crip technoscience into care networks is by sharing knowledge and problem-solving strategies for survival in a fatphobic, ableist, white supremacist world; creating accessible, fat-affirming, crip genetic databases and labs that can test for genetic variants; cripping biotech and research to reframe disability and fatness outside of the medical model; creating lists of medical providers that aren’t fatphobic or ableist, distributing resources and scripts on how to talk to medical providers, providing research and resources for specific diagnoses; creating community online and in-person – these are all ways to re-imagine, re-work and re-wire fat, disabled and “unhealthy” futures. Ways to learn how to critically engage with desires for “health”. These are ways to build coalitions and community with care, with love, even inside institutions, systems, and technologies that are dangerous.

Disclosure statement No potential conflict of interest was reported by the author. 14 S. SCHLAUDERAFF

Notes

1. These “fun” traits, such as how likely customers are to drink more coffee, have also been paired with “fun” and family-friendly content that includes cartoon characters such as the Grinch and Gru from Despicable Me. 2. Black and Indigenous People of Color. 3. Using the term bodymind is a rhetorical strategy to understand and embrace the innate connection between the mind and body. Further, this term recognizes the frequent overlaps and entanglements between physical and mental disabilities. This is an important move for disability studies as there is often a desire to separate and understand physical, mental, cognitive, psychiatric, and behavioral disabilities as distinctly different – when in fact many people, like myself, fit into multiple categories of disabilities. 4. A genetic population of people who share a common ancestry through matrilineal or patrilineal lines, these groups are given letters and sub-numbers that can be mapped geographically and over time. These are determined by testing for pre-determined single-nucleotide polymorphisms (SNPs). 23andMe provides haplogroups based on mitochondrial, or maternal, DNA lines. 5. In 2017 they passed their 1 million customer goal, becoming “one of the largest privately owner genetic databases in the world” with 800,000 of the 1 million customers signing a Research Consent Document allowing their data to be used for further research purposes (Spector-Bagdady 2016, 515–516). “Our genetic research gives everyday people the opportunity to make a difference by participating in a new kind of research – online, from anywhere. Once participants answer online survey questions, researchers link their genetic data to study topics from ancestry, to traits, to disease. These contributions help drive scientific discoveries” (23andMe 2018a). 6. The Latin root “epi” means upon or above; therefore epigenetics “…refers to changes in the genomes that do not involve any change in the structure of genes themselves” (Roberts 2011, 142). 7. Environmental impact focuses on non-genetic factors such as stress, pollution, nutrition and geographic location that can cause mutations and illness that occur in utero or throughout life. 8. I use the term disabled and disabled person/people, rather than people/person with a disability (PWD) because being disabled is part of my identity and is an identity and group that I am proud to be part of. While I could spend this entire article breaking down arguments and definitions for disability, I am not one to argue who “counts” as disabled because this definition looks different in different timespaces and for different bodyminds depending on race, class, gender, size, sexuality, and age. Therefore, disability for me isn’t dependent on a diagnosis, medical definition, or a certain level of impairment, the category of disability is open to anyone who experiences ableism. 9. As Mia Mingus explains “The Medical Industrial Complex is an enormous system with tentacles that reach beyond simply doctors, nurses, clinics, and hospitals. It is a system about profit, first and foremost, rather than ‘health,’ wellbeing and care. Its roots run deep and its history and present are connected to everything including eugenics, capitalism, colonization, slavery, immigration, war, prisons, and reproductive oppression. It is not just a major piece of the history of ableism, but all systems of oppression” (Mingus 2015). 10. “ These constructed ideas of normalcy, intelligence and excellence are deeply rooted in anti-Blackness, eugenics and capitalism. This form of systemic oppression leads to FAT STUDIES 15

people and society determining who is valuable and worthy based on people’s appear- ance and/or ability to satisfactorily produce, excel and ‘behave’” (Lewis 2019). 11. Crip was defined by Sandahl (2003)as“cripple, like queer is fluid and ever-changing, claimed by those whom it did not officially define … The term crip has expanded to include not only those with physical impairments but those with sensory or mental impairments as well” (p. 27). Eli Clare (2015) has described crip as “words to shock, words to infuse with pride and self-love, words to resist internalized hatred, words to help forge a politics” (p. 84). 12. Kafer (2013) writes that crip can include “those who lack a ‘proper’ (read: medically acceptable, doctor-provided, and insurer-approved) diagnosis for their symptoms” (p. 12) and “claiming crip can be a way of acknowledging that we all have bodies and minds with shifting abilities, and that such shifts have political and social meanings and histories” (p. 13). And McRuer (2006) calls for people to “come out as something you are – at least in some ways – not … Coming out crip at times involves embracing and at times disidentifying with the most familiar kinds of identity politics” (p. 57). 13. A favorite example of mine is the alleged placard in Wojcicki’s office that reads “I’m CEO, bitch” (Hayden 2017, 175). 14. However, in the new videos focused on BRCA1/BRCA2 all of the women are Ashkenazi Jewish as the probability for Ashkenazi Jewish women to have the BRCA1/BRCA2 genes and to develop breast or ovarian cancer are significantly higher than for other ethnic groups. Additionally, the three variants they test for are most common for Ashkenazi Jewish people and “do not represent the majority of BRCA1/ BRCA2 variants in the general population” (23andMe 2019c). 15. As of July 28, 2019. 16. Lark “is a Silicon Valley startup that is bringing the best in design, A.I., health coaching, a mobile technology to chronic disease management as a platform” (Lark 2019a). 17. Aside from Josh Hockett’s advertisement (23andMe 2016e); however this ad focused on 23andMe providing more information about optimizing types of exercises and his weight loss was not attributed to 23andMe. 18. Beyond the term bodymind, I frequently use the term bodymindspirit. This inclusion of the spirit heavily draws upon Chicanx scholars like Gloria Anzaldúa, who have contributed to understandings of health, healing, and community within disability studies but often are left out of academic conversations. The exclusion of scholars like Anzaldúa has been noted by other scholars within disability studies such as Kim (2017), Schalk (2017), Minich (2016), and Piepzna-Samarasinha (2018), as well as discussion by Gloria Anzaldúa & AnaLouise Keating in “Disability & Identity: an e-mail exchange & a few additional thoughts” in The Gloria Anzaldúa Reader (2009). 19. Queer and Trans Black and Indigenous People of Color.

Notes on contributor

Sav Schlauderaff, M.A. is a queer, trans, white, disabled Ph.D. student in Gender and Women’s Studies at the University of Arizona with an emphasis on critical disability studies—especially centering chronic illnesses, (embodied/felt) memory, pain, trauma and self-care/community care for the bodymindspirit. Sav combines their academic training in genetics, molecular biology, and gender studies in their academic writing and their work for The Queer Futures Collective (www.queerfutures.com). 16 S. SCHLAUDERAFF

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