I’m a Black, Genderqueer Medical Student: Here’s My Hard-Won Wisdom for Students and Educational Institutions
This article is part of the magazine, "The Future of Science In America: The Election Issue," co-published by LeapsMag, the Aspen Institute Science & Society Program, and GOOD.
In the last 12 years, I have earned degrees from Harvard College and Duke University and trained in an M.D.-Ph.D. program at the University of Pennsylvania. Through this process, I have assembled much educational privilege and can now speak with the authority that is conferred in these ivory towers. Along the way, as a Black, genderqueer, first-generation, low-income trainee, the systems of oppression that permeate American society—racism, transphobia, and classism, among others—coalesced in the microcosm of academia into a unique set of challenges that I had to navigate. I would like to share some of the lessons I have learned over the years in the format of advice for both Black, Indigenous, and other People of Color (BIPOC) and LGBTQ+ trainees as well as members of the education institutions that seek to serve them.
To BIPOC and LGBTQ+ Trainees: Who you are is an asset, not an obstacle. Throughout my undergraduate years, I viewed my background as something to overcome. I had to overcome the instances of implicit bias and overt discrimination I experienced in my classes and among my peers. I had to overcome the preconceived, racialized, limitations on my abilities that academic advisors projected onto me as they characterized my course load as too ambitious or declared me unfit for medical school. I had to overcome the lack of social capital that comes with being from a low-resourced rural community and learn all the idiosyncrasies of academia from how to write professional emails to how and when to solicit feedback. I viewed my Blackness, queerness, and transness as inconveniences of identity that made my life harder.
It was only as I went on to graduate and medical school that I saw how much strength comes from who I am. My perspective allows me to conduct insightful, high-impact, and creative research that speaks to uplifting my various intersecting communities. My work on health equity for transgender people of color (TPOC) and BIPOC trainees in medicine is my form of advocacy. My publications are love letters to my communities, telling them that I see them and that I am with them. They are also indictments of the systems that oppress them and evidence that supports policy innovations and help move our society toward a more equitable future.
To Educators and Institutions: Allyship is active and uncomfortable. In the last 20 years, institutions have professed interest in diversifying their members and supporting marginalized groups. However, despite these proclamations, most have fallen short of truly allying themselves to communities in need of support. People often assume that allyship is defined by intent; that they are allies to Black people in the #BLM era because they, too, believe that Black lives have value. This is decency, not allyship. In the wake of the tragic killings of Breonna Taylor and George Floyd, and the ongoing racial inequity of the COVID-19 pandemic, every person of color that I know in academia has been invited to a townhall on racism. These meetings risk re-traumatizing Black people if they feel coerced into sharing their experiences with racism in front of their white colleagues. This is exploitation, not allyship. These discussions must be carefully designed to prioritize Black voices but not depend on them. They must rely on shared responsibility for strategizing systemic change that centers the needs of Black and marginalized voices while diffusing the requisite labor across the entire institution.
Allyship requires a commitment to actions, not ideas. In education this is fostering safe environments for BIPOC and LGBTQ+ students. It is changing the culture of your institution such that anti-racism is a shared value and that work to establish anti-racist practices is distributed across all groups rather than just an additional tax on minority students and faculty. It is providing dedicated spaces for BIPOC and LGBTQ+ students where they can build community amongst themselves away from the gaze of majority white, heterosexual, and cisgender groups that dominate other spaces. It is also building the infrastructure to educate all members of your institution on issues facing BIPOC and LGBTQ+ students rather than relying on members of those communities to educate others through divulging their personal experiences.
Among well-intentioned ally hopefuls, anxiety can be a major barrier to action. Anxiety around the possibility of making a mistake, saying the wrong thing, hurting or offending someone, and having uncomfortable conversations. I'm here to alleviate any uncertainty around that: You will likely make mistakes, you may receive backlash, you will undoubtedly have uncomfortable conversations, and you may have to apologize. Steel yourself to that possibility and view it as an asset. People give their most unfiltered feedback when they have been hurt, so take that as an opportunity to guide change within your organizations and your own practices. How you respond to criticism will determine your allyship status. People are more likely to forgive when a commitment to change is quickly and repeatedly demonstrated.
The first step to moving forward in an anti-racist framework is to compensate the students for their labor in making the institution more inclusive.
To BIPOC and LGBTQ+ Trainees: Your labor is worth compensation and recognition. It is difficult to see your institution failing to adequately support members of your community without feeling compelled to act. As a Black person in medicine I have served on nearly every committee related to diversity recruitment and admissions. As a queer person I have sat on many taskforces dedicated to improving trans education in medical curricula. I have spent countless hours improving the institutions at which I have been educated and will likely spend countless more. However, over the past few years, I have realized that those hours do not generally advance my academic and professional goals. My peers who do not share in my marginalized identities do not have the external pressure to sequester large parts of their time for institutional change. While I was drafting emails to administrators or preparing journal clubs to educate students on trans health, my peers were studying.
There were periods in my education where there were appreciable declines in my grades and research productivity because of the time I spent on institutional reform. Without care, this phenomenon can translate to a perceived achievement gap. It is not that BIPOC and LGBTQ+ achieve less; in fact, in many ways we achieve more. However, we expend much of our effort on activities that are not traditionally valued as accomplishments for career advancement. The only way to change this norm is to start demanding compensation for your labor and respectfully declining if it is not provided. Compensation can be monetary, but it can also be opportunities for professional identity formation. For uncompensated work that I feel particularly compelled to do, I strategize how it can benefit me before starting the project. Can I write it up for publication in a peer-reviewed scientific journal? Can I find an advisor to support the task force and write a letter of reference on my behalf? Can I use the project to apply for external research funding or scholarships? These are all ways of translating the work that matters to you into the currency that the medical establishment values as productivity.
To Educators and Institutions: Compensate marginalized members of your organizations for making it better. Racism is the oldest institution in America. It is built into the foundation of the country and rests in the very top office in our nation's capital. Analogues of racism, specifically gender-based discrimination, transphobia, and classism, have similarly seeped into the fabric of our country and education system. Given their ubiquity, how can we expect to combat these issues cheaply? Today, anti-racism work is in vogue in academia, and institutions have looked to their Black and otherwise marginalized students to provide ways that the institution can improve. We, as students, regularly respond with well-researched, scholarly, actionable lists of specific interventions that are the result of dozens (sometimes hundreds) of hours of unpaid labor. Then, administrators dissect these interventions and scale them back citing budgetary concerns or hiring limitations.
It gives the impression that they view racism as an easy issue to fix, that can be slotted in under an existing line item, rather than the severe problem requiring radical reform that it actually is. The first step to moving forward in an anti-racist framework is to compensate the students for their labor in making the institution more inclusive. Inclusion and equity improve the educational environment for all students, so in the same way one would pay a consultant for an audit that identifies weaknesses in your institution, you should pay your students who are investing countless hours in strategic planning. While financial compensation is usually preferable, institutions can endow specific equity-related student awards, fellowships, and research programs that allow the work that students are already doing to help further their careers. Next, it is important to invest. Add anti-racism and equity interventions as specific items in departmental and institutional budgets so that there is annual reserved capital dedicated to these improvements, part of which can include the aforementioned student compensation.
To BIPOC and LGBTQ+ Trainees: Seek and be mentors. Early in my training, I often lamented the lack of mentors who shared important identities with myself. I initially sought a Black, queer mentor in medicine who could open doors and guide me from undergrad pre-med to university professor. Unfortunately, given the composition of the U.S. academy, this was not a realistic goal. While our white, cisgender, heterosexual colleagues can identify mentors they reflect, we have to operate on a different mentorship model. In my experience, it is more effective to assemble a mentorship network: a group of allies who facilitate your professional and personal development across one or more arenas. For me, as a physician-scholar-advocate, I need professional mentors who support my specific research interests, help me develop as a policy innovator and advocate, and who can guide my overall career trajectory on the short- and long- term time scales.
Rather than expecting one mentor to fulfill all those roles, as well as be Black and queer, I instead seek a set of mentors that can share in these roles, all of whom are informed or educable on the unique needs of Black and queer trainees. When assembling your own mentorship network, remember personal mentors who can help you develop self-care strategies and achieve work-life balance. Also, there is much value in peer mentorship. Some of my best mentors are my contemporaries. Your experiences have allowed you to accumulate knowledge—share that knowledge with each other.
To Educators and Institutions: Hire better mentors. Be better mentors. Poor mentorship is a challenge throughout academia that is amplified for BIPOC and LGBTQ+ trainees. Part of this challenge is due to priorities established in the hiring process. Institutions need to update hiring practices to explicitly evaluate faculty and staff candidates for their ability to be good mentors, particularly to students from marginalized communities. This can be achieved by including diverse groups of students on hiring committees and allowing them to interview candidates and assess how the candidate will support student needs. Also, continually evaluate current faculty and staff based on standardized feedback from students that will allow you to identify and intervene on deficits and continually improve the quality of mentorship at your institution.
The suggestions I provided are about navigating medical education, as it exists now. I hope that incorporating these practices will allow institutions to better serve the BIPOC and LGBTQ+ trainees that help make their communities vibrant. I also hope that my fellow BIPOC and LGBTQ+ trainees can see themselves in this conversation and feel affirmed and equipped in navigating medicine based on the tools I provide here. However, my words are only a tempering measure. True justice in medical education and health will only happen when we overhaul our institutions and dismantle systems of oppression in our society.
[Editor's Note: To read other articles in this special magazine issue, visit the beautifully designed e-reader version.]
Jessica Ware is obsessed with bugs.
My guest today is a leading researcher on insects, the president of the Entomological Society of America and a curator at the American Museum of Natural History. Learn more about her here.
You may not think that insects and human health go hand-in-hand, but as Jessica makes clear, they’re closely related. A lot of people care about their health, and the health of other creatures on the planet, and the health of the planet itself, but researchers like Jessica are studying another thing we should be focusing on even more: how these seemingly separate areas are deeply entwined. (This is the theme of an upcoming event hosted by Leaps.org and the Aspen Institute.)
Listen to the Episode
Entomologist Jessica Ware
D. Finnin / AMNH
Maybe it feels like a core human instinct to demonize bugs as gross. We seem to try to eradicate them in every way possible, whether that’s with poison, or getting out our blood thirst by stomping them whenever they creep and crawl into sight.
But where did our fear of bugs really come from? Jessica makes a compelling case that a lot of it is cultural, rather than in-born, and we should be following the lead of other cultures that have learned to live with and appreciate bugs.
The truth is that a healthy planet depends on insects. You may feel stung by that news if you hate bugs. Reality bites.
Jessica and I talk about whether learning to live with insects should include eating them and gene editing them so they don’t transmit viruses. She also tells me about her important research into using genomic tools to track bugs in the wild to figure out why and how we’ve lost 50 percent of the insect population since 1970 according to some estimates – bad news because the ecosystems that make up the planet heavily depend on insects. Jessica is leading the way to better understand what’s causing these declines in order to start reversing these trends to save the insects and to save ourselves.
The first thing Jeroen Perk saw after he partially regained his sight nearly a decade ago was the outline of his guide dog Pedro.
“There was a white floor, and the dog was black,” recalls Perk, a 43-year-old investigator for the Dutch customs service. “I was crying. It was a very nice moment.”
Perk was diagnosed with retinitis pigmentosa as a child and had been blind since early adulthood. He has been able to use the implant placed into his retina in 2013 to help identify street crossings, and even ski and pursue archery. A video posted by the company that designed and manufactured the device indicates he’s a good shot.
Less black-and-white has been the journey Perk and others have been on after they were implanted with the Argus II, a second-generation device created by a Los Angeles-based company called Second Sight Medical Devices.
The Argus II uses the implant and a video camera embedded in a special pair of glasses to provide limited vision to those with retinitis pigmentosa, a genetic disease that causes cells in the retina to deteriorate. The camera feeds information to the implant, which sends electrical impulses into the retina to recapitulate what the camera sees. The impulses appear in the Argus II as a 60-pixel grid of blacks, grays and whites in the user’s eye that can render rough outlines of objects and their motion.
Smartphone and computer manufacturers typically stop issuing software upgrades to their devices after two or three years, eventually rendering them bricks. But is the smartphone approach acceptable for a device that helps restore the most crucial sense a human being possesses?
Ross Doerr, a retired disability rights attorney in Maine who received an Argus II in 2019, describes the field of vision as the equivalent of an index card held at arm’s length. Perk often brings objects close to his face to decipher them. Moreover, users must swivel their heads to take in visual data; moving their eyeballs does not work.
Despite its limitations, the Argus II beats the alternative. Perk no longer relies on his guide dog. Doerr was uplifted when he was able to see the outlines of Christmas trees at a holiday show.
“The fairy godmother department sort of reaches out and taps you on the shoulder once in a while,” Doerr says of his implant, which came about purely by chance. A surgeon treating his cataracts was partnered with the son of another surgeon who was implanting the devices, and he was referred.
Doerr had no reason to believe the shower of fairy dust wouldn’t continue. Second Sight held out promises that the Argus II recipients’ vision would gradually improve through upgrades to much higher pixel densities. The ability to recognize individual faces was even touted as a possibility. In the winter of 2020, Doerr was preparing to travel across the U.S. to Second Sight’s headquarters to receive an upgrade. But then COVID-19 descended, and the trip was canceled.
The pandemic also hit Second Sight’s bottom line. Doerr found out about its tribulations only from one of the company’s vision therapists, who told him the entire department was being laid off. Second Sight cut nearly 80% of its workforce in March 2020 and announced it would wind down operations.
Ross Doerr has mostly stopped using his Argus II, the result of combination of fear of losing its assistance from wear and tear and disdain for the company that brought it to market.
Second Sight’s implosion left some 350 Argus recipients in the metaphorical dark about what to do if their implants failed. Skeleton staff seem to have rarely responded to queries from their customers, at least based on the experiences of Perk and Doerr. And some recipients have unfortunately returned to the actual dark as well, as reports have surfaced of Argus II failures due to aging or worn-down parts.
Product support for complex products is remarkably uneven. Although the iconic Ford Mustang ceased production in the late 1960s, its parts market is so robust that it’s theoretically possible to assemble a new vehicle from recently crafted components. Conversely, smartphone and computer manufacturers typically stop issuing software upgrades to their devices after two or three years, eventually rendering them bricks. Consumers have accepted both extremes.
But is the smartphone approach acceptable for a device that helps restore the most crucial sense a human being possesses?
Margaret McLean, a senior fellow at the Markkula Center for Applied Ethics at Santa Clara University in California, notes companies like Second Sight have a greater obligation for product support than other consumer product ventures.
“In this particular case, you have a great deal of risk that is involved in using this device, the implant, and the after care of this device,” she says. “You cannot, like with your car, decide that ‘I don’t like my Mustang anymore,’ and go out and buy a Corvette.”
And, whether the Argus II implant works or not, its physical presence can impact critical medical decisions. Doerr’s doctor wanted him to undergo an MRI to assist in diagnosing attacks of vertigo. But the physician was concerned his implant might interfere. With the latest available manufacturer advisories on his implant nearly a decade old, the procedure was held up. Doerr spent months importuning Second Sight through phone calls, emails and Facebook postings to learn if his implant was contraindicated with MRIs, which he never received. Although the cause of his vertigo was found without an MRI, Doerr was hardly assured.
“Put that into context for a minute. I get into a serious car accident. I end up in the emergency room, and I have a tag saying I have an implanted medical device,” he says. “You can’t do an MRI until you get the proper information from the company. Who’s going to answer the phone?”
Second Sight’s management did answer the call to revamp its business. It netted nearly $78 million through a private stock placement and an initial public offering last year. At the end of 2021, Second Sight had nearly $70 million in cash on hand, according to a recent filing with the Securities and Exchange Commission.
And while the Argus II is still touted at length on Second Sight’s home page, it appears little of its corporate coffers are earmarked toward its support. These days, the company is focused on obtaining federal approvals for Orion, a new implant that would go directly into the recipient’s brain and could be used to remedy blindness from a variety of causes. It obtained a $6.4 million grant from the National Institutes of Health in May 2021 to help develop Orion.
Presented with a list of written questions by email, Second Sight’s spokesperson, Dave Gentry of the investor relations firm Red Chip Companies, copied a subordinate with an abrupt message to “please handle.” That was the only response from a company representative. A call to Second Sight acting chief executive officer Scott Dunbar went unreturned.
Whether or not the Orion succeeds remains to be seen. The company’s SEC filings suggest a viable and FDA-approved device is years away, and that operational losses are expected for the “foreseeable future.” Second Sight reported zero revenue in 2020 or 2021.
Moreover, the experiences of the Argus II recipients could color the reception of future Second Sight products. Doerr notes that his insurer paid nearly $500,000 to implant his device and for training on how to use it.
“What’s the insurance industry going to say the next time this crops up?” Doerr asks, noting that the company’s reputation is “completely shot” with the recipients of its implants.
Perk, who made speeches to praise the Argus II and is still featured in a video on the Second Sight website, says he also no longer supports the company.
Jeroen Perk, an investigator for the Dutch customs service, cried for joy after partially regaining his sight, but he no longer trusts Second Sight, the company that provided his implant.
Nevertheless, Perk remains highly reliant on the technology. When he dropped an external component of his device in late 2020 and it broke, Perk briefly debated whether to remain blind or find a way to get his Argus II working again. Three months later, he was able to revive it by crowdsourcing parts, primarily from surgeons with spare components or other Argus II recipients who no longer use their devices. Perk now has several spare parts in reserve in case of future breakdowns.
Despite the frantic efforts to retain what little sight he has, Perk has no regrets about having the device implanted. And while he no longer trusts Second Sight, he is looking forward to possibly obtaining more advanced implants from companies in the Netherlands and Australia working on their own products.
Doerr suggests that biotech firms whose implants are distributed globally be bound to some sort of international treaty requiring them to service their products in perpetuity. Such treaties are still applied to the salvage rights for ships that sunk centuries ago, he notes.
“I think that in a global tech economy, that would be a good thing,” says McLean, the fellow at Santa Clara, “but I am not optimistic about it in the near term. Business incentives push toward return on share to stockholders, not to patients and other stakeholders. We likely need to rely on some combination of corporately responsibility…and [international] government regulation. It’s tough—the Paris Climate Accord implementation at a slow walk comes to mind.”
Unlike Perk, Doerr has mostly stopped using his Argus II, the result of combination of fear of losing its assistance from wear and tear and disdain for the company that brought it to market. At 70, Doerr says he does not have the time or energy to hold the company more accountable. And with Second Sight having gone through a considerable corporate reorganization, Doerr believes a lawsuit to compel it to better serve its Argus recipients would be nothing but an extremely costly longshot.
“It’s corporate America at its best,” he observes.