APHMG Statement on Disability Justice (PDF; July 25, 2025)

Spanish Translation of Statement

Dear Colleagues, 

Disability is an incredibly broad umbrella, encompassing a range of human differences from the inherent to the acquired, the visible to the invisible, and the physical to the neurological or social-emotional. Importantly, the framing of disability can be centered around deficit or difference. The framework is significant because the lens of deficit uses a medical model to focus on “problems” with a person’s body or mind that should be “fixed,” and this model is one that often appears in clinical settings. The lens of difference, however, uses a social model to understand how one’s disability might influence their ability to navigate physical and virtual spaces. In this context, the goal of accessibility is to ensure the environment is open to people with a range of abilities. That is, with the social model, the thing that needs fixing is the environment, not the person. In fact, the Americans with Disabilities Act, passed in July of 1990, brings this lens to bear when we think about minimum standards for public spaces, allowing people with disabilities to access these environments without further accommodation. Because of this important advance in disability justice, Disability Pride Month is celebrated internationally every July. 

There are many ways in which geneticists and medical educators can bring awareness to issues of disability justice in service of inclusivity. A few important examples include:  

• honoring disability culture and not assuming an individual with a disability views their difference as undesirable or something that requires fixing, e.g.deafness, short stature 

• avoiding the assumption that individuals with disabilities have lower quality of life 

• learning language norms that apply to specific communities and confirming patient preferences on how they would like to refer to their disability, e.g. person-first vs. identity-first language 

• centering patient values when counseling on reproductive options, particularly when prenatal screening or embryo selection for conditions involving disability are available 

• including community members on research teams, clinical groups, or steering committees to prioritize inclusion of their voices and perspectives in conversations on community needs 

In an era in which social supports for people with disabilities are being drastically cut, it is even more important to ensure our learning environments help to develop providers with awareness of the issues that impact people with disabilities. Here we have compiled a list of resources that can provide some tools to learn and teach about disability, ableism, and inclusive medical education.We hope these resources will help you get started on this critical call to action. As always, we remain committed to working and learning together to promote a more equitable society. 

 Yours in Solidarity, 

Shoumita Dasgupta, PhD, Chair, Engagement, Outreach, and Belonging 

With APHMG Executive Officers 

Resources: 

• Crip Camp: A Disability Revolution 

• Reframing Disability: The Role of Professional Organizations in Fostering Inclusion for Disabled Physicians (part of a Disability Inclusion in UME Supplement of Academic Medicine) 

• Core Competencies on Disability for Health Care Education 

• Disability, Genetic Counseling, and Medical Education: From Eugenics to Anti-Ableism 

• Words matter: The language of difference in human genetics 

• Where Biology Ends and Bias Begins: Lessons on Belonging from Our DNA 

• Project Inclusive Genetics: Clinical Decision-Making in the Prenatal Setting