About Disability
“A Disability Justice framework understands that all bodies are unique and essential, that all bodies have strengths and needs that must be met. We know that we are powerful not despite the complexities of our bodies, but because of them.”
– Patty Berne, “Skin, Tooth, and Bone – The Basis of Our Movement Is People: A Disability Justice Primer”
The term disability evokes various connotations for different people. Davis (2016) writes, “To understand the disabled body, one must return to the concept of the norm, the normal body…I would like to focus not so much on the construction of disability as on the construction of normalcy. I do this because the ‘problem’ is not the person with the disabilities; the problem is the way that normalcy is constructed to create the ‘problem’ of the disabled person” (p. 1).
Some of the most commonly held perspectives on disability are the medical model and the charity model. The medical model of disability focuses on a “problem” in a person’s body as the source of disadvantages experienced by the person (Goering, 2015), with the implication that the “solution” is a treatment, cure, or ridding the person of the condition. The related charity model of disability presents people with disabilities[1] as victims, highlighting people without disabilities as helpers rather than focusing on fostering autonomy for people with disabilities (Retief & Letšosa, 2018). These models regard disability as negative, leading to interventions that disregard the agency and humanity of people with disabilities (ibid) and also contribute to microaggressions (ActiveMinds et al., 2023) that commonly associate disability with insult.
By making an effort to recontextualize our framework on disability to the social model and human rights model, we are actively moving toward a more inclusive worldview. The social model of disability focuses on identifying and changing environmental, structural, and attitudinal barriers to foster more inclusive societies (Goering, 2015). Building on the social model, the human rights model of disability (United Nations, 2006) also identifies societal barriers but centers people with disabilities as the primary decision makers in their lives and acknowledges the real impact of impairment in daily life (Disability Advocacy Resource Unit, 2019).
What is the evidence?
Disability encompasses a vast range of conditions and life experiences, with types of disabilities including learning, physical, intellectual or developmental, neurodivergence, chronic illness, emotional, mental health, and behavioral disorders, and so on (Nakamura & Tilton, 2023). Disability can be present from birth, or it can be acquired (ibid), such as a brain injury or loss of hearing later in life. Disabilities may be easily noticeable by others, such as conditions requiring assistive devices, or they may be non-apparent (ibid), such as diabetes. Given the tremendous diversity in disability, what people need to be able fully participate without barrier – commonly referred to as access needs or accommodations – varies depending on the individual (ibid).
People with disabilities represent 16% of the world’s population (World Health Organization, 2023), and they are overrepresented in STEM fields (Wei et al., 2013). Science has benefited from the contributions[2] of this community. A significant barrier to employment in STEM higher education includes finding employers with disability-friendly policies, adequate healthcare access, and finding an understanding workplace culture (Handforth & Mellors-Bourne, 2020), particularly in productivity expectations and working hours that contribute to fatigue (Pain, 2017). Additional barriers include employer hesitations in hiring people with disabilities, unconscious bias, and discrimination (Domzal et al., 2008).
What can you do?
- Read The Three Parts of Self-Advocacy for People with Disabilities (Covey, 2021)
- Read What I’ve learned from a decade of working with a disability in academia (Wilkinson, 2023)
- Learn more about the Global Disability Innovation Hub (2023)
- Increase effectiveness with inclusive practices in meetings (Harvard Office for Equity, Diversity, Inclusion, and Belonging, 2023)
- Learn from this TED talk (9:14) I’m not your inspiration, thank you very much by disability advocate Stella Young (includes options for Japanese subtitles under Settings > Subtitles/CC) (Young, 2014)
- Watch this brief (3:15) humorous explanation of different models of disability (Disability Advocacy Resource Unit, 2021)
- Read Nature: How science can do better for neurodivergent people (Pells, 2022)
- Learn about Universal Design for Learning (UDL) guidelines for optimizing the teaching and learning for all people based on scientific insights into how humans learn (CAST, 2018)
- Read more perspectives from people with disabilities, such as How to Make Professional Conferences More Accessible for Disabled People: Guidance from Actual Disabled Scientists (Serrato Marks, 2018) and Neurodiversity: How to make your lab more inclusive (Stivison, 2020)
- Read this comprehensive Checklist for Making Science Labs Accessible for Students with Disabilities (Ontario's Universities Accessible Campus, 2014)
- Read Disability-Inclusive Considerations for Living in a Community (Stanford Office of Accessible Education, n.d.)
- Read the 10 Principles of Disability Justice from a disability justice group (Sins Invalid, 2015)
[1] “Person-first language” or PFL (example: people with disabilities) was popularized with the first major self-advocacy disability rights movement in the USA in the 1970s as a tool to emphasize the humanity of people who had commonly been labeled as “victims” or “patients” (Wooldridge, 2023). In recent years, some disability activists argue that PFL implies a stigma around disability and distances people from an integral part of their identity, offering “identity-first language” or IFL as an alternative (example: Disabled people). Using Disability with a capital “D” signifies a “collective cultural identity” and is a “political description of the shared, disabling experience that people with impairments face in society” (Disability Rights UK, 2012). Both PFL and IFL are commonly used, but a best practice is to ask individuals for their language preference rather than assume.
[2] Distinguished scientists, engineers and mathematicians with disabilities include Farida Bedwei, Temple Grandin, Stephen Hawking, Dorothy Hodgkin, Edwin Krebs, Sang-Mook Lee, and John Nash, Jr.