Becoming a successful bioethics scholar is no easy feat, even for a supercrip like me.
I am a supercrip, a person with disabilities who overcomes great obstacles to accomplish goals that would be extraordinary for anyone, disabled or not. Many folks in the disability community find this trope harmful, and it certainly is at times. Throughout my life, I have felt internalized pressure to over-perform academically for fear of otherwise losing people’s respect. At the same time, I am also proud to be a supercrip because of the institutional changes I often instigate in the process of pursuing intellectual achievements.
I was born with cerebral palsy in December of 1989, just months before the passage of the Americans with Disabilities Act (ADA). Talk about interesting timing! Having the law on our side has made it easier for my family and me to advocate for opportunities and support services I may not have had growing up if I had been born ten years earlier. I have grown up alongside the ADA. In practical terms, this means I have often been the first person with my level of cerebral palsy to have access to a robust education. I was the first student with significant physical disabilities in Miami-Dade County Public Schools to fully integrate into general education in 1995. I was the first trainee with significant physical disabilities to complete a bioethics fellowship at the NIH. Today, I am the first trainee with cerebral palsy at the Stanford School of Medicine.
Perhaps unsurprisingly, my accomplishments have made me a magnet for media attention. At the age of two or three, I appeared on the front page of the local section of the Miami Herald, as part of an article spotlighting the success of my school district’s early intervention program. When I got into Harvard College in 2008, the Herald selected me as Student of the Year and wrote a front-page story about my high school graduation with the headline “Harvard Next Stop for Grad with Palsy.” As newspaper articles go, the story did a pretty good job describing my accomplishments and some of the challenges I confronted throughout public education. The article caught the attention of folks well-beyond Miami. The public relations team of my favorite band at the time, Jefferson Airplane, sent me a signed poster as a graduation gift. Even more humbling, soon-to-be First Lady Michelle Obama wrote me a congratulatory note with some personal reflections on the freedom and challenges of being a college student. Being a supercrip does come with its perks!
Teaching Others to Welcome Me
It has been a true blessing to teach individuals and institutions how to be more welcoming and inclusive of people like me. At the same time, being one of the first people with my level of disabilities to accomplish what I have (often with inadequate accommodations and support) is exhausting. The articles and books documenting my accomplishments often underplay the time and energy it takes for me to be the best version of myself in life and at work. I extend this criticism to much of my own autobiographical writing, as well as the accounts of others. It is often difficult to get the attention of editors by describing the less-than-glamorous details of my everyday life. Moreover, these writings share a success story, and it is often difficult to strike a balance between recognizing where me and my allies have triumphed and candidly acknowledging our mistakes and areas where we can improve our inclusive practices.
With all of this in mind, I want to share some reflections on the difficulties of being a disabled trainee that many folks, even those trying to do the right thing, might not even think about because they do not make it onto the front page of the Miami Herald or are otherwise not on many people’s minds.
US Social Welfare System
People who are not disabled often fail to recognize how the US social welfare system, or lack thereof, disincentivizes people like me from working. Medicaid often places income limits on folks who require support in independent living, such as paid personal care assistants. There are clear data that employers are unlikely to hire someone like me. Assuming employers are willing to hire a disabled person, they don’t realize the services the employee will lose if they happen to exceed Medicaid’s spending limit. They certainly aren’t prepared to take on the added financial responsibility of paying for the services or paying a high enough wage to make them affordable. I have been very fortunate so far in finding supportive training institutions. NIH and Stanford have provided 40 hours of personal care assistance a week. Many disabled academics, including the well-known disability historian Paul Longmore, have worked hard to have successful careers without the support I have had. I am the beneficiary of white middle-class privilege, my parents’ careful tutelage in advocacy, the courage and foresight of mentors who are willing to advocate alongside me, and sheer good luck in finding them at the right institutions at the right times.
More than Compliance
The Americans with Disabilities Act is supposed to be a floor, not a ceiling. Bioethics training institutions and employers should not get a gold star for simply being in compliance with the ADA. Instead, these institutions should view the law as a starting point and think proactively about what accessibility and inclusion should look like in a particular organization. They should be reflective on how hiring practices might, even unintentionally, disadvantage applicants with disabilities. Institutions should work with people with disabilities in the communities they serve and/or their disabled employees to think about which practices are essential to the position and what things might be conventions that can be reasonably modified to meet the needs of a disabled applicant. Moreover, hiring committees should never ask about the cost of an applicant’s accommodations. Even if these questions are not asked with discriminatory intent, they can make someone feel very uncomfortable. These questions can be, however, a reasonable part of the negotiation process after someone with a disability has been offered a position.
Federal Funding
Despite 30 years of living under the ADA, physical building accessibility remains a problem. In my view, part of the process of promoting accessibility in the workplace will have to involve reforming the ADA to include a federal funding mechanism for companies to receive support in providing resources to bring buildings up to ADA standards and to enhance accommodations for employees.
A Place to Belong
Even if an employer technically meets the requirements of the ADA, there is generally a lack of thoughtfulness in how to reorganize and restructure workplaces so that they are truly places where disabled people like me can belong. Organizations must remember that disability access does not stop once someone can perform the critical functions of a job. We need more thoughtful efforts at the institutional level to elevate disability in DEI efforts. Depending upon the size and resources available to some workplaces and not others, federal and state funding should be available to offset the cost of these efforts. Biased language permeates academics. We need interventions against disability-based micro- and macroaggressions.
Inclusive Workplace Activities
I encourage engagement in similar deliberative and reflective processes for workplace activities. For example, as someone with a speech impediment who has difficulty eating and talking at the same time, it’s time for organizations to deprioritize cocktail parties and think about networking activities that don’t involve messy finger food or congregating in spaces with poor acoustics.
I shouldn’t have to be a supercrip to have a place
Whatever my future holds, I look forward to when the success of people like me is not as contingent on being in the right place with the right people at the right time. I shouldn’t have to be a supercrip to be successful in academic bioethics. I’d much rather work in a field where stories like mine are the norm, not the exception.
Kevin Mintz, PhD is a post-doctoral scholar at the Stanford Center for Biomedical Ethics.