Disability Bioethics and the “Liabilities” of Personal Experience

In “Bioethics and the Moral Authority of Experience”, Ryan Nelson et al argue that personal experience can simultaneously be an asset and a liability in the practice of bioethics and medicine. They appeal in part to long-standing debates in disability bioethics, pointing out that no single experience of disability can be representative of all people with disabilities. The same can be said for any aspect of human experience, but focusing on disability seems intentional here. In Nelson et al’s view, it seems, any member of a disability community fortunate enough to rise above structural ableism to have a voice in bioethics must have a conflict of interest. This conflict supposedly arises because their lived experiences position them to have a stake in the outcomes of disability-focused research, or advocating for disabled patients. Their claim is a weighty assumption, one that I posit is deeply misguided and dangerous. In this commentary, I argue that, as a field, bioethics ought to concern itself with the risks of giving too little weight to the voices of disabled people who engage with bioethics and medicine, rather than focusing on potential liabilities of bias on the part of disabled people themselves.

Let me begin by saying a bit about myself. I was born with cerebral palsy and live with multiple disabilities. Most prominent among them, I cannot walk. I have a speech impediment and only learned to talk as well as I do after 10 years of intensive speech therapy. I cannot type independently, nor efficiently read printed text. As such, I use a wheelchair and rely on a robust team of personal care attendants and research assistants to perform most personal and professional activities. Beyond my disabilities, I am a proud gay man. I live with my partner of six years who also lives with disabilities. I am a lifelong fan of Disney theme parks, Broadway musicals, and Hollywood films. I am also the first trainee with my level of impairment to complete a postdoctoral fellowship in bioethics at the NIH and the first postdoctoral scholar with cerebral palsy to be trained at the Stanford School of Medicine (Mintz 2022). Each of these aspects of my identity has shaped the kind of bioethicist I am and the projects I prioritize.

Yet, I worry that Nelson et al would reduce the totality of my personhood to my impairments, alleging that I am motivated exclusively by the self-interests arising from my particular conditions. Moreover, they would claim that insights I provide on disability as a bioethicist should be taken with a grain of salt (p. 9) because I have a vested interest in all questions of disability access. My disability is so deeply a part of my identity that it shapes how I think and navigate the world around me. Too often, individuals dismiss what I or other disabled people have to say because they fail to recognize how inaccessible or ableist the built environment is. I do not have a conflict of interest when I draw on my knowledge of disability to enhance a project, or participate in an ethics consultation. I began my journey in academia to better understand my own oppression. Along the way, I have learned to understand, appreciate, and interrogate aspects of life with a disability that are not directly related to my life with cerebral palsy, nor will improve how I live with it.

Since 2017, I have been conducting research on a series of lawsuits against Disney Parks and Resorts US, brought by people with autism and their families. The plaintiffs sought a modification in Disney queueing procedures that would grant them accelerated access to rides at Disneyland and Walt Disney World (Mintz 2021). I began the project after experiencing my own accessibility challenges at Disneyland (Mintz 2018). Even though my lived experience going to Disney was an entry point into the project, conducting academic research on the cases required me to develop a broad base of knowledge beyond my personal experience to present Disney’s counterarguments in a balanced way. I had to learn about aspects of the disability experience very different from my own. I became an observer of the “autism wars” that Nelson et al refer to (p. 5), grappling with my observation that many autistic individuals either disagree with the plaintiffs’ positions, or believe that the ability to receive accelerated access to Disney’s attractions should not be a priority for neurodiversity activism. I also had to develop a thorough understanding of how Disney manages crowds at its theme parks.

Over the past five years, I have come to care very deeply about the plaintiffs and their attorney, but my interest in these cases is not one of direct benefit. Even if the plaintiffs had prevailed, I would not have been given accelerated access to Disney’s attractions. My primary interest has been to tell these individuals’ stories, and I do not think my commitment to that interest gets in the way of being responsible in charitably constructing Disney’s counterarguments. I do not see how my lived experience is a liability here. In fact, my lived experience of going to Disney since childhood enabled me to ask the right questions, and over time, enabled me to understand why a group of autistic individuals and their family members might invest so much time and energy to receive accelerated access to Disney’s rides (Mintz 2019).

To be fair to the authors, they do make space for lived experience being an asset in disability bioethics, and their methodology for positioning oneself in a bioethical debate would probably make room for me to exercise my epistemic advantage in weighing in on the Disney cases (I would probably fit in quadrant IV of their matrix). Yet, by superficially analyzing some ethically complex debates in disability bioethics – and completely ignoring others – I think Nelson et al neglect to recognize the multidimensional and nuanced nature of lived experience.

Let us not forget that being able to engage in bioethical debates necessitates a form of intellectual privilege and social capital that most people, disabled or able-bodied, do not possess. The leaders in disability bioethics, such as Teresa Blankmeyer Burke, Jackie Leach Scully, and Joe Stramando, draw on both lived experience and extensive philosophical training and expertise. Each of these scholars have their own biases, as do we all. But a qualified disability bioethicist is able to recognize the limits of their lived experience and imagine the commonalities and differences among diverse disability experiences. In scrutinizing disability bioethics in the way they do, Nelson et al do a disservice to our field. They marginalize the voices of disability bioethicists, suggesting that we should take them with a “grain of salt” (p. 9).

In fact, empirical data on structural ableism in medicine suggests that we should probably give significant weight to the perspectives of disability bioethicists. In a national survey, Iezzoni et al found that 82% of 714 physicians believe people with disabilities have a lower quality of life than those without disabilities (2021). More recently, Iezzoni et al report that 35.8% of those physicians knew “little or nothing about their legal responsibilities under the ADA [Americans with Disabilities Act],” and 71.2% answered incorrectly about their responsibility to provide reasonable accommodations under the ADA. Ultimately, 68.4% believed themselves to be at risk of an ADA lawsuit (2022). In addition, people with disabilities experience considerable health disparities that are often exacerbated by racism, classism, sexism, homophobia, transphobia, and ageism (Wong 2020).

The authors acknowledge that in unjust circumstances it might make sense to give more weight to the voices of those who are marginalized (p. 13, 14). Nonetheless, by focusing disproportionately on how personal experience might be a liability in bioethics, they obscure the justice-based argument for ensuring that lived experiences of disability are taken seriously in our field. No one disabled person can speak to all disability experiences. Yet, when I am the only person with disability expertise on an ethics committee or consultation service, does it really matter in an ableist world what quadrant of Nelson et al’s matrix my expertise and limits of knowledge fall into? I suspect they would say yes, but I am not sure what practical insights their matrix yields for me, besides an unnecessary reminder that my experience and expertise has its limits.

Bioethics should be reflective and intentional about the role personal experience plays in disability bioethics, research ethics, and other domains. But recognizing the limitations of personal experience should not come at the cost of further marginalizing the marginalized. Instead, we should think carefully and proactively about ways to promote diversity, equity, and inclusion that avoids the tokenism of, for example, having one trainee with cerebral palsy. We should also be creative in how we cultivate institutional capacity for serving patients who are underserved by medicine and healthcare. Despite their efforts, I do not think Nelson et al have given us a method for how to do this noble and urgent work.