Navigating a research career with a disability

As a toddler, I was diagnosed with severe sensorineural hearing loss in both ears. Despite being fitted with hearing aids, I struggled to understand my teachers and peers in noisy environments. These challenges, however, led me to pursue a career in neuroscience research. Today, as a postdoctoral fellow, I am using my personal experience with hearing loss to tackle fundamental questions about the brain and hearing. My academic journey has been empowering on a personal level; I have grown to embrace my disability and see value in my unique experiences. I owe a large part of this growth to discovering a community of scientists who, like me, also have hearing loss.

Until I was a fifth-year PhD student, I knew very few deaf or hard-of-hearing (d/hh) people and none in academia. I would often conceal my hearing loss from others, worried that they would treat me differently or judge me negatively. I would neglect to request the accommodations I needed (e.g. captioning). Without accommodations, I would miss crucial information presented during lectures and seminars. Serendipitously, however, the way I approached the research world with my disability would shift.

It was 2015, and I had written a personal statement for a travel award letter to attend a scientific conference (Association for Research in Otolaryngology). For the first time, I disclosed aspects of my personal journey with hearing loss (the topic of my research abstract). My letter found its way to Dr Tilak Ratnanather, an Associate Research Professor who uses a cochlear implant and a hearing aid. He invited me to join a group of d/hh researchers spanning all career stages and STEMM disciplines (Adler et al., 2017; Huyck et al., 2021; http://deafearscientists.org). I was shocked – I went from thinking I was the only scientist with hearing loss to finding a community of people like me! Since then, being a part of this vibrant community has opened my eyes to the shared – and diverse – experiences that we have as d/hh researchers. I've learned about accommodations and tools that I didn't know existed and saw how my d/hh peers navigate their academic careers, learning from the strategies that work for them.

For example, first, proactively provide captioning for all presentations, regardless of whether accommodations are requested. Even automatic captioning is better than no captioning at all. Second, ensure that all speakers, including those in the audience, use a microphone when talking. Understanding questions from the audience is notoriously difficult! Third, always face those you are conversing with. Access to lip-reading and facial expressions is enormously beneficial for understanding speech. If you are wearing a mask, be sure to project your voice and avoid mumbling. If you notice that the person you are talking with is struggling to understand you, don't give up! Write what you have to say if necessary. Finally, always be aware of background noise and move to quieter environments if possible. By implementing these strategies, you can ease the challenges faced by d/hh individuals, and create environments that allow us to engage fully and effectively in our scientific pursuits.

My hearing loss has made me a more creative, resilient and resourceful scientist. Being a part of the d/hh community and supported by mentors that share my lived experience has not only built my confidence in myself as a researcher, but, importantly, has given me a strong sense of empowerment and pride in my unique perspective as a d/hh scientist. I encourage others who may have had a similar experience to have the courage to be open and transparent; you never know what community you might discover.

I vividly remember attending my first baseball game. I was fascinated with the level of focus, determination and grit the players displayed under pressure each inning. It felt like the odds were against them and still they pushed on.

Following my aspiration of trying out for the varsity baseball team of my high school, I prepared by training and modeling what I saw from the baseball game. While life was truly on an upswing, I began experiencing pain in my right leg during the summer of my junior year. Despite my efforts to hide this mysterious illness, the pain overwhelmed me; my mother found me in bed delirious from a fever. After a couple of doctor visits, MRIs and biopsies, I was diagnosed with Ewing's sarcoma, which had already metastasized to my lungs. I felt sincere guilt for not telling my mother sooner about the pain, but she reaffirmed that ‘el que persevera, alcanza’, meaning ‘the one who perseveres, succeeds’. To save my life, the medical doctors had to remove my entire right hip and part of my right femur leaving me with an ambulatory disability. Although I often felt overwhelmed by the pain and endless procedures, through my treatment I regained some of the mobility in my leg while learning to persevere by being patient, diligent and disciplined, determined that any obstacle can be toppled with hard work and a positive outlook.

The reality was I could no longer become a Major League Baseball player so the next obvious choice for me was to become a scientist, inspired by the team of oncologists that saved my life. My undergraduate experience was the first of many challenges to face in my pursuit of higher education. I completed my Bachelor's degree in Chemistry at the University of California, Santa Cruz (UCSC). Learning how to access transportation services was key as I still was relearning how to walk post-surgery. Anyone who has attended the Santa Cruz Developmental Biology meeting can attest to both the challenging terrains and the breathtaking ocean views.

Navigating graduate school as a minority, gay and disabled student was a difficult process. I often felt the need to hide my identities to not stand out too much, fearing that I may be judged for being me. Frequently, my disability was the first of my identities to hide and whenever questioned about why I struggled to walk I would respond with a simple ‘I am tired’. However, the long hours at the bench coupled with the extensive literature research quickly took a drastic impact on my body. During the third year of my graduate education, I realized that I was doing a disservice to myself, and the scientific community, by hiding my disability and thus not reaching my full potential as a scientist. I sought opportunities to fund the accommodations I required and, unfortunately, I had a difficult time. Together with my PhD advisor, I wrote and applied for a small grant that allowed us to pay for several of the accommodations I needed – this was a game changer! With my new equipment and accommodations, I was able to minimize the strain on my leg, which, in turn, allowed me to focus on my work and be the scientist I was meant to be.

After completing my academic training, I joined Genentech's Drug Development Training Program with the goal of contributing to the advancement of new therapeutic discoveries. My experience in my position at Genentech has been incredibly rewarding. Moreover, access to proper accommodations gave me a different experience as accessibility was fully integrated as part of the onboarding process for new employees. Although the academic/professional experience of a disabled person may be different, having the proper accommodations remains a larger issue. Be you, be bold – a phrase used at Genentech – truly embodies my experience in science. To be the best scientist we can be, we must push forward with pride in all our intersectionalities so we can keep asking the bold scientific questions that keep transforming our lives.

While I appear to navigate the world with ease, many do not see the plethora of debilitating ailments that I struggle to manage daily. I have Ehlers–Danlos Syndrome (EDS), a connective tissue disorder that affects collagen. Diagnosis and management of my symptoms (joint dislocations, dizziness, chronic debilitating pain, and more) is further complicated because my illness is invisible. During my 6-year diagnostic odyssey, it was clear that EDS was understudied; there were many answers doctors could not (and still cannot) provide and this is precisely why I pursued a research career.

The invisible nature of my disability mimics how I feel in the scientific community – largely unseen. There are numerous barriers that prevent scientists with physical disabilities from successfully integrating into STEMM fields, but I can only speak to my own. As a PhD student, I struggle the most with the physical accessibility of my environment and the financial burden of my disability. To physically pursue my PhD, I must spend significant time studying and optimizing my environment to meet my needs, such as which combination of buses gets me to lab the fastest with the guarantee of a seat (being invisibly disabled means no one offers you a seat). In the lab, I have adapted my equipment (see https://docs.google.com/presentation/d/1EpkbdGJjV_0fjs0voz0BvvXrsbTxJPlTXb2G0XCo6CI/edit?usp=sharing and #labdaptations on Twitter/X) to reduce hand fatigue and joint dislocations. But not everything can be optimized, including healthcare. Because my disability is multisystemic, I see upwards of ten specialists and have over 50 necessary medical appointments every year. Although fixing American healthcare is not the responsibility of academia, it is important to acknowledge that societal issues intersect with the ability to succeed in academia. For example, paying for maximum out-of-pocket limits, transportation, physical therapy, prescriptions and adaptive equipment is expensive; it is a challenge to meet these payments with a graduate student stipend.

However, paramount to these barriers is the lack of awareness surrounding systemic and institutional obstacles that people with physical disabilities encounter. Meaningful, lasting change that promotes the retention of scientists with disabilities cannot happen unless our stories are shared. Becoming aware of the obstacles scientists with disabilities encounter is part of working towards making us a visible part of the scientific community. Far too often, the burden of awareness and advocacy promoting accessible practices falls on individuals with disabilities. We are not invincible and we need support from non-disabled people in power.

One can take many steps to learn about ableism and increase awareness surrounding accessibility issues: follow activists on social media, watch documentaries (e.g. Crip Camp) and read personal narratives (e.g. Disability Visibility; Wong, 2020) to appreciate stories from individuals navigating the world with disabilities and issues affecting our community. Become aware of your institution's disability resource center and accommodation process. Work to make accessibility the standard and the norm. For example, before any event, send out a survey to ask whether any accommodations are needed to attend and successfully engage with the event. In the lab, take a note from my most shared #labdaptation and equip all lab spaces with a plastic Eppendorf tube opener (they benefit able-bodied people, too!).

Scientists with disabilities are an asset to academia. We are creative problem solvers, have unique patient-scientist perspectives, and are persistent; but it is not easy to continue working in an environment in which there is no community or adequate resources. I have spent my graduate career as both an advocate and a scientist, but the meaningful, lasting change I hope to implement is not something I can do alone. If you are reading this, you have taken the first step towards the promotion of a more disability-aware scientific community, but please do not stop there. Participation in any of the above acts helps to flip the narrative on disability, appreciating scientists with disabilities for who we are and not the limitations we are perceived to have. Share this, spread awareness, and help to make us a visible part of the scientific community.

Disabilities vary between people – some are present at birth, whereas others develop over time, but the challenges one goes through are more or less the same. People have different mindsets and viewpoints about the term ‘disability’. Many people don't like to disclose their disabilities, because of concerns that doing so could affect their day-to-day life or working environment. Even when they do gain confidence and seek acceptance for their disability, society doesn't support them.

I had grown up with my cousin who has Down's syndrome. As a child, my mind was preoccupied with thoughts looking for answers to understand my relative. When I didn't get an appropriate answer, I ended up feeling hopeless. The journey becomes even more difficult when you are seeking answers in a rural area where there is a lack of awareness about genetic disorders in society. My relative's smile makes my day and motivated me to pursue my career in science with the idea that, at the very least, I can be a voice to spread messages about how people with disabilities are special, unique individuals who must be respected and appreciated. I wanted to advocate not only to the rest of my own family, but to the millions of families out there. In doing so, I hope to contribute to spreading awareness in society.

Special measures should be taken to ensure that persons with disabilities can access all kinds of facilities without discrimination. Although I am lucky to have a very supportive family, we encounter many people who are not as ready to accept as my family are. Nowadays, people focus mainly on one's disabilities (physical, cognitive or intellectual) and often ignore their other qualities, such as their skills in painting or cooking. We ignore the possibility that, with proper support, they can improve their learning skills and become great authors, speakers, professors, inventors and entrepreneurs. Therefore, a deliberate shift is needed to break such discrimination barriers.

Over the years, science has advanced a lot in understanding the basis of disability, but we are bound by its limitations. However, it's hope that keeps us going. Experts have made the world a better place with their phenomenal contributions to science and technology, and their latest discoveries have shaken the world. What seems impossible now can maybe be a reality in the future.

Since an early age, I have been highly ambitious about my career, but, in 2015, I was diagnosed with gastroesophageal reflux disease. A day before writing my final exam for my Master's degree, I was admitted to the hospital and I got discharged only a few hours before the exams. After taking saline injections, my hands were swollen and, in such a condition, I wrote my exams and became the top of my class. That was one such incident, but there were many times in my daily life when my body started giving up; I have to be very careful with what I eat and my daily life routine. It was one of the toughest phases of my life; I was away from home in a different city, alone, and it was definitely not easy to deal with the complications of my condition while at the same time pursuing my career.

Even in such situations, I am still a student; I used to give home tuition, volunteer for workshops and work with several non-governmental organizations, as well as having a part-time job at my university to meet my daily expenses and to support my family. I am a self-made person, and, in my eyes, my dreams are more significant than any challenges that come my way. I am thoroughly enjoying this roller coaster ride; it is helping me to know myself, my strength, my capabilities in a better way. It's the faith, hope, dedication, belief and support of my family members that make me keep going. The journey has been difficult, but I never gave up and I was successful: I am finally a graduate student now. There will be situations in which we have to decide whether to quit or to continue. I choose to continue, not only for myself, but to reach out to many people who are still afraid to pursue their dreams because of their disabilities. Have faith, aim high and work hard as no one knows you and your capabilities better than yourself.

Disabled scientists offer unique perspectives in academia, rooted in a deep understanding of the essential role of basic research in addressing human needs. We are also astonishingly under-represented and frequently excluded from equity, diversity and inclusion (EDI) discussions altogether. In the adjacent Perspective article (Morgan, 2023), I review the literature on disability in STEMM, report survey findings, explore the barriers and offer pointers for inclusion in the developmental biology community. In this piece, I share my own lived experience of physical congenital disability.

I have congenital talipes equinovarus (CTEV), commonly known as ‘clubfoot’ or, preferably, ‘talipes’. Talipes affects the lower limb and mine is severe, with total muscle wastage below the right knee, ankle-fusion and limb shortening. This affects my gait, and in turn, my entire musculoskeletal system, bringing severe pain and a tendency for my leg to ‘give way’ unexpectedly. Having spent much of my childhood in Great Ormond Street Hospital, I am intimately acquainted with the hospital environment. This early exposure stirred my curiosity in developmental biology and is unequivocally the reason I pursued a research career. Alongside academic interest, this motivation is empathy-driven, borne of a desire to improve the experiences of children like those I grew up with. I could not imagine a more impactful way to contribute than making fundamental discoveries at the bench.

Pride in my identity as a disabled person has been a complex journey, fraught with stigmatisation, discrimination, and a lack of representation. However, during this journey I developed unwavering determination, resilience and a confident voice for disability advocacy. The support of allies in the developmental biology community bolstered this. As a previous co-chair of the Young Embryologist Network (YEN), I am thankful to have helped implement our ‘Working in science with a disability’ talks at the YEN 2022 conference. Building on this momentum, I helped establish the British Society for Developmental Biology (BSDB) disability support grant, perhaps the first of its kind in its field (Morgan, 2023). Our community is evidently supportive, but the barriers disabled people face are systemic.

These barriers prevent many disabled people from entering an academic career altogether. In my own childhood, yearly surgeries, extensive recovery time and regular medical appointments resulted in significant periods of missed schooling. Combined with extra costs, for me incurred by further transport and specialised orthotic footwear (increasingly worsened in the UK by National Health Service cuts), disabled people face substantial hardship before even beginning to tackle the standard challenges of university education. It has been as difficult financially as it has been physically to be a disabled scientist on a PhD student stipend.

I would especially like to highlight the importance of language in disability inclusivity. It is painstakingly common to witness ableist/disablist terms in causal day-to-day use, which contributes significantly to the ‘othering’ of disabled individuals. Moreover, we must be particularly responsible as developmental biologists, given that our work includes investigating developmental differences or ‘birth defects’. Genetic and phenotypic nomenclature impact how people affected are perceived and treated. For instance, although I prefer ‘talipes’, it is just a shortening of ‘CTEV’, which essentially means ‘horse-foot’, which is not much better than ‘clubfoot’. It can be difficult for disabled people to feel authentically included when these are the ways we are described.

Overall, the current traction in promoting disability inclusivity in STEMM is reassuring. Positive change for our community begins with platforming and listening to disabled people, but authentic inclusivity can only be implemented with support at every level. In my own career, I look forward to continuing work in both disability advocacy and scientific research and am currently exploring the possibility of doing so in future as a clinician-scientist. We must celebrate individuals and promote visibility. You would be hard-pressed to find someone more resilient than a disabled scientist.

K.L.A.: I thank our Hearing-Inclusive ARO (‘HI-ARO’) group for their camaraderie, mentorship and support. I also thank the faculty mentors of HI-ARO, including Brad Buran, Julia Huyck, Tilak Ratnanather, Lina Reiss, Peter Steyger, and many others for their guidance and for being role models for other d/hh researchers, especially early career d/hh scientists. O.C.: I thank Lindsay Hinck, Ophir Klein, Yanwen Jiang, Elizabeth Punnoose and Paul Fielder for their unwavering support throughout my personal and scientific career. R.M.: I thank my family members, friends, all my professors, my mentor in my PhD, the non-governmental organisations (JCI Vizag, Srujanavani), and everyone there by my side throughout this journey. My special thanks to the Genetics Society of America for giving me this opportunity to write this article. Without your support and blessings, I could not be here where I am today. J.D.M.: I thank Alex Eve (Development) for the positive engagement on disability inclusivity and for providing a platform for disabled scientists in the developmental biology community.