My mom was 37 years old when she was pregnant with me and was offered amniocentesis because of her age. I grew up hearing this story many times, and when I started graduate school, I asked what she would have done had the testing come back positive for certain chromosome conditions the doctors tested for. She indicated she would have terminated the pregnancy.

Influenced by conversations at home and annual viewings of Mexico’s teleton, I developed a perspective on people with disabilities as recipients of charity and as sources of inspiration. Born and raised in a Catholic family, everything in my life was attributed to religious factors – being non-disabled was a blessing from God. No one explicitly instructed me to adopt this mindset but growing up in a Mexican household with unexamined generational beliefs promoted misconceptions. Societal expectations reinforced these misconceptions too, as being non-disabled allowed me societal privileges. This led me to mistakenly believe that all individuals with disabilities had a lower quality of life.

As my first semester in graduate school began, I was eager to pursue my passion for genetics and human health. Little did I know that this journey would lead me to confront not only personal biases, but also those entrenched in this profession’s historical associations with eugenics and their enduring impact on the disability community. Disability advocate and genetic counselor, Devin Shuman, aptly captures my recent endeavor to address biases in the following quote:

“I like the garden metaphor for our brain – we can’t always choose what concepts were planted in our minds in the past, it’s not always our fault if weeds flourished when we weren’t looking. However, it is our responsibility to take the time to dig out those weeds and to nurture the plants we want to grow.”

In my experience, many of the challenges within our profession emerge from a lack of introspection and a failure to confront the ingrained biases within our cultures. It is imperative that we engage in self-reflection and recognize these biases, be they ableist, racist, sexist, or homophobic, etc., as a key step toward transformation.

Intersectional Lenses of Disability

Intersectionality significantly influences decision-making processes related to pregnancies. Coined by Kimberlé Crenshaw, this concept acknowledges that all individuals hold intersecting social identities that interact in unique ways, shaping an individual’s experiences and challenges. Understanding the intersectionality of identity is crucial, as it underscores the diverse and intricate narratives that shape people's lives.

Applying an intersectional perspective enables genetic counselors to offer more inclusive care, especially for patients facing heightened barriers – such as individuals with disabilities holding other marginalized identities or parents of people with disabilities lacking adequate resources and support. Reflecting on my mom’s circumstances, I can understand where she was coming from. She worked in service jobs throughout most of her life, raising me and my siblings on her own. When she became pregnant with me, she did not have the support or resources necessary to provide for a child with increased medical needs. This highlights the significance of considering systemic barriers in discussions about disability and how these barriers create biases against the disability community. It also highlights the impact of privileges, as had my mom been white and had she had socioeconomic privilege, her situation might have been entirely different.

The overturn of Roe v. Wade eliminates the reproductive choices that many patients once had, leaving them with limited options in nearly half our country. This shift means that more pregnant people will be forced to give birth without access to resources, stability, or support. The impact of this decision will disproportionately harm people with marginalized identities. Individuals with the means to travel to another state for a safe and legal abortion, those equipped to provide for a child, or those with other favorable circumstances will not face the same healthcare and societal inequities. In contrast, individuals without the proper financial and social support will face greater barriers to equitable care. Our patients come from diverse backgrounds – encompassing various socioeconomic statuses, races, ethnicities, and more – creating distinct experiences as they navigate the world. Restrictions to abortion access across the country compounds challenges for people with disabilities with intersecting marginalized identities.

A Call to Action

When I think about my mom’s experience in this reproductive climate, I think about the limited options she could have faced regardless of what the test showed. While one of the primary goals of genetic counselors is to empower individuals in making reproductive choices, we need to bridge the gap between reproductive justice and disability advocacy. We’re trained to be neutral advocates for our patients – to not support one option over the others. However, many of us unconsciously say and do things that affect our patients’ decision-making.

As genetic counselors, our commitment extends beyond genetics to champion reproductive justice that embraces the complexities of disability. By challenging stigmas, advocating for accessibility, and fostering a narrative of inclusivity, we contribute to a more equitable landscape. While we may not hold the power to alter state laws, our advocacy and support for patients with limited choices can ripple across the nation. Engaging in ongoing self-reflection and challenging our perspectives ensures that we navigate the evolving discourse on disability with sensitivity and awareness. In working towards a world where every individual can navigate reproductive choices with dignity and empowerment, we must acknowledge and integrate the principles of intersectionality. Through these collective efforts, we aim not only to challenge existing stigmas and advocate for accessibility but also to recognize the diverse intersectional experiences that shape the reproductive journeys of those we serve. In this pursuit, we should strive for a world where every pregnant person has access to options that fit in the context of their lives.

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