Disability Justice Education Toolkit: Cultural Awareness

Defining disability is more complex than it might seem! When asked to imagine a person with a disability, many people are likely to picture someone with a visibly apparent physical or mobility impairment–consider that the most widely recognizable symbol of disability depicts a wheelchair user. However, physically disabled individuals are only one facet of the highly diverse and dynamic social identity group united through the lived experience of disability. Numerous definitions of disability–medical, legal, political, educational–demonstrate the complexity and nuance of describing an experience that is malleable, contextual, and relational. In order to broadly explore the topic of disability as it relates to the UMass community, this toolkit series will intentionally embrace an expansive definition of disability that includes visible and invisible disability, as well as conditions that are self-identified, medically diagnosed, and/or externally perceived as a disability by others. 

“When we speak of disability we are celebrating the brilliance and vitality of a vast community of peoples with non-normative bodies and minds, whether a disability is visible or not. This includes, though [is] not limited to, folks who identify as disabled, chronically ill, Deaf, mad, neurodivergent, and more.”

– Showing Up For Racial Justice Disability Justice Caucus

Historically, disability was commonly understood within the context of religious and medical models. The oldest of these, the moral model, associated disability with sin or wrongdoing, and posited that disability was the result of moral weakness. Along with the advent of modern Western medicine, disability was still understood primarily as a deficit or defect, but one that could now be “fixed” through intervention by expert medical professionals in a medical rehabilitation model. Both of these models contextualized disability as an individual problem that placed disabled people on the margins of society, emphasized their differences, and assumed that all disabled people should want to be as close to “normal” (i.e. non-disabled) as possible. The burden of inclusion fell solely on disabled people, instead of on a dominant culture that failed to account for their differences and attune to their needs.

Largely as a result of advocacy from the disability rights movement, the prevailing contemporary model has shifted to a social model of disability which posits that the deficits lie not with the individual, but with a society that does not value their inherent worth, account for their unique needs, or seek paths to full inclusion for all. As described by disability activist Deborah Kaplan, this model “recognizes social discrimination as the most significant problem experienced by persons with disabilities, and as the cause of many of the problems that are regarded as intrinsic to the disability under the other models.” In other words, disability itself is not the issue – environmental accessibility, cultural stigmas, and social constructs about disabled people’s experiences, abilities, and intrinsic value are. While people with disabilities may still choose to pursue various medical treatments and interventions, the social model of disability intentionally centers the agency of individuals making decisions about their own lives and bodies.

Contemporary disability justice advocates further encourage us to see disability as a dynamic spectrum, as opposed to a static, binary identity. The idea of being “temporarily abled” acknowledges that most people will experience conditions of disability at some point in their lives due to illness, injury, age, and other variable factors. There is also a deepening recognition of the ways in which invisible disabilities, especially those related to neurodivergence and mental health, deserve intentional consideration in conversations about equity and inclusion.

Climate Change

In the emerging climate crisis, individuals with environmental illnesses, autoimmune diseases, and other disabilities are often experiencing the effects of environmental changes first and/or most severely. The International Climate Justice Movement has widespread support and involvement from folks with disabilities who are already experiencing the effects of the climate crisis in a particularly harmful way. 

Covid-19 Pandemic

Beginning in 2020, the COVID-19 global pandemic greatly impacted the disabled community and approaches to disability justice work in many ways. For instance, it has led to increased visibility of the disabled community and recognition of the disproportionate impact on marginalized groups, including people who are immunocompromised, as well as communities of color. The pandemic has also urged people to think about accessibility differently, with many schools, employers, and other organizations offering greater flexibility around remote participation, and more widespread adoption of adaptive/assistive technology that benefits folks with diverse abilities and accommodation needs.

Reflection: Although the Covid-19 pandemic is still ongoing, many institutions/organizations have expressed a desire to return to pre-pandemic norms and procedures. You may have heard the phrase “going back to normal” being used in various spaces, but what implications might this return to pre-pandemic norms have for accessibility and disability justice?

Read this quote from activist and writer Sonya Renee Taylor and consider the questions that follow: “We will not go back to normal. Normal never was. Our pre-corona existence was not normal other than we normalized greed, inequity, exhaustion, depletion, extraction, disconnection, confusion, rage, hoarding, hate and lack. We should not long to return my friends. We are being given the opportunity to stitch a new garment. One that fits all of humanity and nature.” and reflect upon the following questions:

Who benefits from going “back to normal”? Who may be harmed in this process? What is the impact on people with disabilities in particular?

How can we continue to use and expand upon the strategies and technologies utilized since Covid-19 to further accessibility and justice?

Post-ADA Disability Justice: What’s Next?

While the passage of the ADA in 1990 sparked a variety of much-needed changes, many Americans perceive this legislation as having “solved” inaccessibility, instead of seeing it as the invitation to continually imagine new possibilities that it should have been–and still can be! Basic ADA compliance is not an endpoint when it comes to crafting accessible, inclusive spaces, but rather a place to begin. 

The World Institute of Disability, along with other disability justice organizations, encourages us to consider how we can progress beyond disability rights (basic civil rights for people with disabilities) to disability justice - an intersectional, coalition-based approach to holistic cultural change that benefits everyone by centering and uplifting the needs of people with disabilities.

Future offerings in this toolkit series will invite the UMass community into deeper conversations about inclusivity beyond ADA compliance, and encourage readers to consider how we can all play an important role in cultivating environments that honor and promote true disability justice.

Questions for Independent Reflection

• Do you think about disability and accessibility often or infrequently? Why?
• Which elements of this toolkit feel illuminating, challenging, and/or affirming to you? Why do you think that is?
• Where did your knowledge about disability come from? What messages did you receive about disabled people from your family and culture of origin? How and why have your ideas and beliefs changed over time?
• What is your personal connection to disability? What role does disability play in your life, or the lives of those close to you? 

Questions for Group Discussion

• Where have we encountered or benefited from disability advocacy and activism in the UMass community? What are some ways that we could actively support and/or participate in this work?
• What would it look like for us to move through our days with a lens of disability justice? What practices would we continue in our lives, relationships, and communities? What would we change?
• What actions would we like to take as a result of our independent and collective reflection? How will we hold ourselves and one another accountable for the goals we set?

What are some key moments in the history of the United States disability justice movement?

1954 - Brown v the Board of Education Supreme Court decision ruled that race-based public school segregation was unconstitutional, providing a foundation that would later support the argument for desegregating education for children with disabilities.

Mid 1950s - An era of deinstitutionalization saw widespread closure of state mental hospitals and a shift towards community-based health services and rehabilitation

1970s - The Independent Living Movement begins with the first Center for Independent Living, a service agency run by and for disabled people, opening in CA in 1972 

1974 - The last remaining “Ugly Laws”--statutes that prohibited the public appearance of people with visible disabilities—are repealed in Chicago

1977 - The 504 Sit-In sees over 120 disabled demonstrators occupy the Department of Health, Education, and Welfare (HEW) building in San Francisco for 25 days advocating for enforcement of disability rights legislation. The sit-in draws cross-movement support from the Butterfly Brigade, the Black Panthers, unions, Civil Rights groups, the Chicano group Mission Rebels, religious leaders, and local lawmakers

1990 - During the “Capitol Crawl”, disabled protestors abandoned their mobility aids and climbed up steps at the National Mall to raise awareness of the struggles that people in the disability communities face, spurring Congress to pass the Americans with Disabilities Act (ADA)

1999 - The Olmstead v. L.C. Supreme Court case rules that unjustified segregation of people with intellectual disabilities is a form of unlawful discrimination under the ADA

2005 - The Disability Justice Collective, led by disabled, Queer activists of color, ushers in a “second wave” of the disability rights movement that explicitly examines disability in relation to other forms of systemic oppression and calls for solidarity with other social justice and civil rights movements

Resources for Continued Learning: Disability History & Culture

• Readings and Media on Disability and Accessibility from the UMass Amherst Libraries
• Sins Invalid: An Unshamed Claim to Beauty in the Face of Invisibility (education and performance)
• History of Disability, Identity, Culture, and Community, UMass Disability Culture & Community Speaker Series (event recording)
• Disability History Timeline from the National Consortium on Leadership and Disability
• Crip Camp: A Disability Revolution (documentary film)
• Disabled Activists to follow on social media (list)
• Disabled Creators to follow on Youtube (list)

Recommended Reads

• Care Work: Dreaming Disability Justice by Leah Lakshmi Piepzna-Samarasinha
• The Future Is Disabled: Prophecies, Love Notes and Mourning Songs by Leah Lakshmi Piepzna-Samarasinha
• The Minority Body: A Theory of Disability by Elizabeth Barnes
• Disabled Faculty & Staff: Intersecting Identities in Higher Education (Volume 2)
• Disability Visibility: First-Person Stories from the Twenty-First Century by Alice Wong

Resources for Continued Learning: Best Practices in Accessibility

• Inclusive by Design: A Disability Inclusion Toolkit from the UMass President’s Office
• Online Meeting Best Practices from UMass Information Technology
• Accessibility and the Canvas Learning Management System
• Wheelchair Etiquette Training (video with audio descriptions)
• Service Dog Etiquette Training (video with audio descriptions)

UMass Resources for Students

For disability community on campus

• Karuth Silver Cultural Center 
• Disability Culture Club

For accommodations and support

• Disability Services
• Disability Accommodations - Living at UMass
• Assistive Technology Center

UMass Resources for Staff & Faculty

For disability community on campus

• UMAIDA (UMass Allies for Illness and Disability Access)
• Alliance Against Ableism  (contact: [email protected] for information)

For accommodations and support

• Accessible Workplace
• Assistive Technology Center