C-Hub Spotlight, Issue 9, December 2023

Featured Topic: 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).

[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.

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).

We are coordinating a centralized effort to support disability accommodations across OIST. Further information will be forthcoming, but if you have any questions, please contact us at C-Hub@oist.jp.

[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.

What can you do?

For people with disabilities:

For both allies and people with disabilities:

Upcoming C-Hub Events:

  • OIST Inclusive Communication Symposium Registration. The OIST Inclusive Communication Symposium will occur March 7-8, 2024. Our 2024 theme, Inclusive Communication, creates a forum for considering the ways in which organizations and individuals can center equity and inclusion to enable maximally effective communication structures and practices to ultimately foster engagement, creativity, and wellbeing. C-Hub is still accepting poster presentation proposals until December 22. Presenters must register for the symposium; over 75% of seats have been filled, so we encourage you to register as soon as possible. Registration closes January 31, 2024.

C-Hub Diversity, Equity, and Inclusion Updates:

  • We offered a professional development workshop on inclusive event facilitation, with 100% of survey participants indicating they would recommend the experience to others
  • We met with different stakeholders for follow-up consultations after the Decolonizing Science Academia talk with Dr. Thilina Heenatigala
  • We provided individual consultations for various stakeholders on inclusive language in university-wide campaigns and events
  • We delivered a workshop on Writing Diversity Statements for the Academic Job Search Series
  • The second cohort of the Peer Mentoring Circles program has been actively exploring issues, resources and actions in relation to topics such as Diversity, Equity, and Inclusion, Women’s Leadership, Inclusive Communication, and Wellbeing

While we plan to offer workshops and trainings in the coming months, please do not hesitate to reach out if you or your group would like an individual or team consultation in the meantime: C-Hub@oist.jp.

References and Further Reading:

ActiveMinds, CLASP, & The Trevor Project. (2023). C-A-L-M Toolkit by Active Minds, CLASP, and the Trevor Project. Active Minds. https://www.activeminds.org/about-mental-health/microaggressions/

Berne, P. (2017). Skin, Tooth, and Bone – The Basis of Movement is Our People: A Disability Justice Primer. Reproductive Health Matters, 25(50), 149–150. https://doi.org/10.1080/09688080.2017.1335999

CAST. (2018). Universal design for learning guidelines version 2.2. The UDL Guidelines. https://udlguidelines.cast.org/

Centers for Disease Control and Prevention. (2020). Disability and Health Overview. Centers for Disease Control and Prevention; CDC. https://www.cdc.gov/ncbddd/disabilityandhealth/disability.html

Chronically Academic. (2021, March 7). Chronically Academic. Chronically Academic. https://chronicallyacademic.org/

Covey. (2021, February 9). The Three Parts of Self-Advocacy for People with Disabilities. Covey. https://covey.org/self-advocacy/

Davis, L. J. (2016). The disability studies reader. Routledge, An Imprint Of The Taylor & Francis Group.

Disability Advocacy Resource Unit (DARU). (2021). Human Rights Model of Disability - Featuring Ellie the Equality Emu. YouTube. https://www.youtube.com/watch?v=Jig5uNbN3xk

Disability Rights Florida. (n.d.). 10 Steps to Effective Self-Advocacy - Disability Rights Florida. Disability Rights Florida. Retrieved December 18, 2023, from https://disabilityrightsflorida.org/disability-topics/disability_topic_info/10_steps_to_effective_self_advocacy

Disability Rights UK. (2012). Social Model of Disability: Language | Disability Rights UK. Disability Rights UK. https://www.disabilityrightsuk.org/social-model-disability-language

Domzal, C., Houtenville, A., & Sharma, R. (2008). Survey of Employer Perspectives on the Employment of People with Disabilities: Technical Report. (Prepared under contract to the Office of Disability and Employment Policy, U.S. Department of Labor). https://www.dol.gov/sites/dolgov/files/odep/research/surveyemployerperspectivesemploymentpeopledisabilities.pdf

Global Disability Innovation Hub. (2023). Global disability innovation hub. Global Disability Innovation Hub. https://www.disabilityinnovation.com/

Goering, S. (2015). Rethinking Disability: The Social Model of Disability and Chronic Disease. Current Reviews in Musculoskeletal Medicine, 8(2), 134–138. https://doi.org/10.1007/s12178-015-9273-z

Handforth, R., & Mellors-Bourne, R. (2020). Qualitative research on barriers to progression of disabled scientists. In Royal Society. Careers Research & Advisory Centre (CRAC). https://royalsociety.org/-/media/policy/topics/diversity-in-
science/qualitative-research-on-barriers-to-progression-of-disabled-scientists.pdf

Harvard Office for Equity, Diversity, Inclusion, and Belonging. (2023). Inclusive Meeting Guide. Harvard University. https://edib.harvard.edu/files/dib/files/inclusive_meeting_guide_final_1.pdf?m=1617641674

Nakamura, K., & Tilton, N. (2023). What is disability? Mad Lab at Cal; UC Berkeley Disability Lab. https://disabilitylab.berkeley.edu/disability-101/disability-101-what-is-disability/

Oliver, M. (2009). Understanding disability: from theory to practice. Palgrave Macmillan.

Ontario's Universities Accessible Campus. (2014). Checklist for Making Science Labs Accessible for Students with Disabilities. In Ontario’s Universities Accessible Campus. Council of Ontario Universities. https://www.accessiblecampus.ca/wp-content/uploads/2017/01/Checklist-for-Making-Science-Labs-Accessible-for-Students-with-Disabilities.pdf

Pain, E. (2017, May 15). Survey highlights the challenges disabled academics face—and what can be done to address them. Science. https://www.science.org/content/article/survey-highlights-challenges-disabled-academics-face-and-what-can-be-done-address-them

Pells, R. (2022). How science can do better for neurodivergent people. Nature. https://doi.org/10.1038/d41586-022-04248-5

Retief, M., & Letšosa, R. (2018). Models of disability: A brief overview. HTS Teologiese Studies / Theological Studies, 74(1), 1–8. https://doi.org/10.4102/hts.v74i1.4738

Serrato Marks, G. (2018, November 8). How to Make Professional Conferences More Accessible for Disabled People: Guidance from Actual Disabled Scientists. The Equation. https://blog.ucsusa.org/science-blogger/how-to-make-professional-conferences-more-accessible-for-disabled-people-guidance-from-actual-disabled-scientists/

Sins Invalid. (2015). Principles of Disability Justice. In Sins Invalid. https://static1.squarespace.com/static/5bed3674f8370ad8c02efd9a/t/606e264c8c838d062a7b0fbb/1617831500521/10+PRINCIPLES+OF+DISABILITY+JUSTICE+-+Plain+Text.pdf

Stanford Office of Accessible Education. (n.d.). Being Neighborly: Disability-Inclusive Considerations for Living in a Community | Office of Accessible Education. Oae.stanford.edu; Stanford University. Retrieved December 18, 2023, from https://oae.stanford.edu/students/being-neighborly-disability-inclusive-considerations-living-community

Stivison, E. (2020, May 22). Neurodiversity: How to make your lab more inclusive (part 1). ASBMB Today; American
Society for Biochemistry and Molecular Biology. https://www.asbmb.org/asbmb-today/careers/052220/neurodiversity-how-to-make-your-lab-more-inclusive

United Nations. (2006). Convention on the Rights of Persons with Disabilities (CRPD) | Division for Inclusive Social Development (DISD). United Nations. https://social.desa.un.org/issues/disability/crpd/convention-on-the-rights-of-persons-with-disabilities-crpd

Wei, X., Yu, J. W., Shattuck, P., McCracken, M., & Blackorby, J. (2013). Science, Technology, Engineering, and Mathematics (STEM) Participation Among College Students with an Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 43(7), 1539–1546. https://doi.org/10.1007/s10803-012-1700-z

Wilkinson, M. (2023, June 28). What I’ve learned from a decade of working with a disability in academia. Inside Higher Ed;
Times Higher Education. https://www.timeshighereducation.com/campus/what-ive-learned-decade-working-disability-academia

World Health Organization. (2023, March 7). Disability and Health. WHO; World Health Organization: WHO. https://www.who.int/news-room/fact-sheets/detail/disability-and-health

Young, S. (2014, June 9). I’m not your inspiration, thank you very much | Stella Young. YouTube. https://youtu.be/8K9Gg164Bsw