We were not prepared for the resistance we would meet as we began navigating the genetic counseling profession as individuals with disabilities. Our experiences culminated as we both found ourselves in the prenatal space. One as a new graduate; the other as a student in one of their final rotations. One with an invisible disability; the other with a visible disability.

I (Amy) have spent my entire life being my own best advocate, learning what I need and how to process the range of positive and negative interactions that I can have with others related to my disability. Before entering my prenatal rotation, I recognized potential biases I might encounter when others observed my physical disability. Would people assume what my thoughts would be on abortion because I have a disability? Would patients feel comfortable sharing with me their needs and desires for their family? I sought guidance extensively throughout the GC community and was simply told: “Survive your rotation and never go into prenatal” and “prenatal likely isn’t the best fit for you.” When facing the reality that I wanted (and needed) to truly explore the prenatal specialty, I was told one “option” would be to conceal and mask my disability, to sit behind a desk and have patients brought to me so patients would feel more comfortable.

Despite this harmful advice, I ended up loving my prenatal rotation. I was there for my patients to provide them with the best care possible. I developed my own counseling style and gained great experience. Although not entirely surprised, I still question why this aspect of my identity received so much attention in prenatal, but my very impactful experiences of cancer in my family were never brought up as a concern in my cancer rotation. 

I have felt the isolation of being a person with a physical disability throughout my training. The acts of othering and damaging words continue to impact me. When I was hopeful to be met with open arms by this community of my future GC colleagues, I was instead met with a clear underlying message that I am an outcast. What has been most upsetting is the lack of willingness to engage in this conversation and the avoidance of our GC community to confront this intersection of the varying social perceptions of disability, the prenatal setting and trainees/professionals who identify as having disabilities. NSGC continues to promote important conversations regarding J.E.D.I., including how patients navigate the intersection of disability and reproductive justice, but how can we achieve these goals when there is disdain for disabled GCs in the reproductive space?   

I (Lara) have often struggled with advocating for my needs and accommodations. Frequently, individuals are unaware that I have ADHD and struggle with memory, attention, anxiety, depression, time blindness and executive function. I mask my disability most of the time, and it is exhausting to do daily tasks. When preparing to enter the prenatal space, I received consistent pushback given my diagnosis: “I just want you to make sure this is the right fit for you” “Are you sure this is something you want to do?” “Are you sure you can manage the emotional toll of prenatal?” 

They could not have been more wrong. The high-risk prenatal specialty is a good fit for me as the nature of prenatal allows me to drop the facade of perfection, and together with my families prioritize their care. Did I miss something in the session? We can cover that in a follow up call. Did I forget something in my office? No worries, my families understand and are willing to wait, and sometimes even appreciate the extra time to process. Did the session take longer than expected? Not a problem, I was showing my families they are my priority, and together we created a plan for their care. 

One of the most frustrating aspects of having a disability in the workplace is that I try to think ahead and advocate for various needs and accommodations. On the surface, I can appear as though I glide through various tasks, but people do not see how hard I am treading water to complete all of the mental and background work to keep appearances. People often refuse accommodations until we “see how it goes.”  In other words, they need proof of my failure before I can receive help. This breaks trust, forces me towards burnout and is not sustainable.

Why do both of us feel pressured to mask our disabilities? Honestly, we mask so that we can have a successful career in genetic counseling. We mask our disabilities to try to avoid being “othered,” as well as to spare ourselves from judgment, assumptions and mistreatment. It is not unusual for us to feel that we must mask as a tool to be treated with respect. Whether that is spending extra hours outside of work to keep up appearances or using different mobility aids to make a permanent disability seem temporary. The level to which one can mask their disability is a privilege, and changes what is “acceptable” to pursue as a career. The genetic counseling community continues to exclude disabled GCs. Instead, the two of us have created community with each other. We empower each other to pursue our goals, personally and professionally, and support each other when advocating for our own needs. We hope that we can extend that to all of you. 

Amy Mook, MS, MPH (she/her) is a graduate of the University of Michigan Genetic Counseling Program. She is now a genetic counselor within the Department of Neurology at the University of Michigan.

Lara Grether, MS, CGC (she/her) is a prenatal genetic counselor at Corewell Health East in Royal Oak, Michigan. She graduated with her Master’s of Science in Genetic Counseling from the University of Michigan in 2023.