#ThinkEquitable

by Ayesha Tariq

What is disability justice? When I think about it, it makes sense, but I’m not sure it’s as clear for others. It makes me think about this conversation I had with a faculty member, Dr. R, at my school. There was some talk among students about other students who were getting additional time on exams. Many comments were negative, calling it ‘unfair.’ But I think it was really a lack of understanding. Though it seems the students receiving this accommodation of additional time had an advantage, they really didn’t. Dr. R put all of this in perspective for me. She said the student’s accommodations were really a way to ‘level the playing field, so to speak.’ The additional time would put the students at the same starting mark as the other students. This is what’s meant by equity. Equal is giving all the students the same exam. But equity is giving all the students the same means (or accommodations) to take the exam. This made perfect sense to me. 

That conversation gave me a glimpse of what disability justice stands for. To me it is giving the tools, resources, treatment to those who don’t have the access and who are treated unjustly. Disability justice stands for equitable and fair treatment. Because what’s justice if it only includes some but not all? Not to be corny, but doesn’t this country’s Pledge of Allegiance itself say, “One nation, indivisible, with liberty and justice for all.”¹

The Oxford English Dictionary chronicles the definition of ‘disability’ over time starting from 1545 where disability was defined as the “lack of ability (to discharge any office or function); inability, incapacity; weakness.” ² The word evolved over time opening doors to legal jargon. In 1571, disability was “a restriction framed to prevent any person or class of persons from sharing in duties or privileges which would otherwise be open to them; legal disqualification.” ² Disability rights appeared in the OED in 1921, defined as “the human, civil, and legal rights belonging to disable people; spec. the rights of disabled people to be treated without discrimination and to enjoy equality of opportunity with abled people.” ²

It always baffles me when I think about how we can fight for something, win it, and then forget all about it. Isn’t that why history always repeats itself? Even the early uses of the word disability pointed to the discrimination going on at the time! If the definition existed during that time, then an event must’ve occurred to spark the definition into existence in the first place. And after all these centuries, we’re still fighting for rights for all including the disabled. 

If the concept of disability justice still isn’t clear, then read the different descriptions of disability justice below.

The Disability Activist Collective 2010 defines disability justice as,

“…the cross-disability (sensory, intellectual, mental health/psychiatric, neurodiversity, physical/mobility, learning, etc.) framework that values access, self-determination, and an expectation of difference. An expectation of difference means that we expect difference in disability, identity, and culture. To be included and part of society is about being able to be our “whole self” (all of our identities together). Disability Justice includes space for self-care, reflection, and hard discussions.”³

Disability justice attempts to secure rights for disabled people including those in marginalized communities such as people of color, immigrants, LGBTQIA+, homeless, incarcerated, ancestral lands stolen.⁴ Mia Mingus explains that disability justice does not mean that ‘everyone can and should be able to do everything on their own,’ which she calls the myth of independence. Instead, Mingus claims that “no one does it on their own” and points to interdependence being the key to fighting for disability justice and not independence.⁵ Similarly, Patty Berne highlights that the framework of disability justice understands “that all bodies are unique and essential” having strengths and needs. All bodies are bound in ways of “race, gender, sexuality, class, ability, nation state and imperialism” and cannot be unbound or separated.⁶

Disability justice has been around for longer than I knew. But despite it being around for a while, it seems many people aren’t aware of what it is. That each person deserves to be treated fairly, equitably, and with respect should be common knowledge, if not rudimentary knowledge. Having a disability of any kind shouldn’t exclude someone from having these basic rights. What perplexes me are those people who believe they should be excluded. 

I’m still learning about disability justice. And on this path of learning, I plan to bring awareness and advocate for disability justice.

Ayesha Tariq is a medical student at the University of California Riverside School of Medicine. She plans on pursuing psychiatry as her intended medical specialty. In addition to the required medical school curriculum, she is studying Medical Humanities and Health Humanities at the medical school and is currently a fellow of the Health Humanities and Disability Justice (Lab) at the University of California Riverside. Ayesha first became involved in healthcare justice after starting medical school where she learned from faculty about how deep health disparities are in medicine and academia, and then witnessing these health disparities and injustices firsthand while rotating in hospitals and clinics across the country in her third and fourth years of medical school.

References

1. “The Pledge of Allegiance.” Historic Documents. April 1, 2024. https://www.ushistory.org/documents/pledge.htm
2. ‘Disability’ etymology in the Oxford English Dictionary. Oxford University Press, 2023. https://www.oed.com/search/advanced/Meanings?textTermText0=disability&textTermOpt0=WordPhrase
3. Ortiz, N. (2012, October 25). Disability Justice Framework. Disability Activist Collection 2010. https://disabilityj.blogspot.com/
4. Hudson, H. (2021, September 8). Moving from Disability Rights to Disability Justice. World Institute on Disability. https://wid.org/moving-from-disability-rights-to-disability-justice/
5. Resource Library, Disability and Philanthropy Forum. “What is Disability Justice?” https://disabilityphilanthropy.org/resource/what-is-disability-justice/
6.  Berne, P. (2015, June 10). Disability Justice – a working draft by Patty Berne. https://www.sinsinvalid.org/blog/disability-justice-a-working-draft-by-patty-berne

Resources

• Definitions for ‘disability justice’
  • https://disabilityphilanthropy.org/resource/what-is-disability-justice/
• The 10 Principles of Disability Justice
  • https://code.as.ucsb.edu/the-10-principles-of-disability-justice/
• Disability and Justice in the Stanford Encyclopedia of Philosophy
  • https://plato.stanford.edu/entries/disability-justice/
• Disability Terminology (from a course on Critical Disability Studies)
  • https://cdsc.umn.edu/cds/terms

Reflecting on a Season of Impact and Looking Ahead: Our Journey at The National Center for Disability, Equity, and Intersectionality

As the year comes to an end, it is a time for reflection at the National Center for Disability, Equity, and Intersectionality. This fall has been a remarkable journey, filled with learning, sharing, and advocating. We’ve had the privilege of connecting with thousands of people across the country, amplifying our messages about the intersectionality of disability and other marginalized identities in healthcare, community settings, and justice systems.

Reaching Diverse Audiences

Our team has been on the move, participating in influential conferences that have allowed us to engage with key stakeholders.

The HCBS conference planning committee invited our Associate Director, Leah Smith, to share about our Center’s work related to Home and Community Based Services with the nearly 1,500 attendees.

During the American Society of Bioethics and Humanities Conference in Baltimore, Maryland, with 1,200 attendees, the Center’s work on coercive sterilization and disability justice was presented as a flash talk and on the main stage.

In October, I joined a group of invite-only organization leaders in Washington, DC, to discuss the transition of disabled youth to adult healthcare, shining a light on the additional barriers faced by youth of color, LGBTQ youth, and girls, women, and young people who identify as female.

At the Association of University Centers on Disability in Washington, DC, we engaged with over 500 academic leaders and researchers to introduce our Center’s first year and present our work on police brutality experienced by disabled people, especially disabled people of color.

Our presence at the Association of Public Health Conference in Atlanta, Georgia, allowed us to intersect public health perspectives with our core mission, reaching over 12,000 public health professionals.

And finally, just last week, we attended the TASH conference with 2,000 attendees in Baltimore, Maryland, to present our work and network with professionals about the experiences, strengths, and needs of people with significant disabilities with multiple marginalized identities. 

Beyond conferences, we’ve delivered over a dozen guest lectures across various institutions, sharing our insights and broadening our understanding of diverse strengths, needs, and experiences within the disabled community through these invaluable interactions.

Advocacy Through Action

This year, our advocacy efforts were significant. We’ve actively responded to multiple calls for comments on crucial policies and decisions impacting disabled individuals. Our inclusive approach ensures the voices of disabled people are heard and integrated, staying true to our commitment as a center led by and for disabled individuals. Aligned with our commitment to inclusion, we’ve developed plain language summaries of the comments we submit. This ensures that more people can understand our work and join us in our advocacy. Most recently, we’ve shared plain language summaries for our comments on proposed 504 regulations and on proposed changes to the census. What other plain language resources would you like to see? Leave us a comment to let us know.

In 2024, we anticipate additional responses to calls for comments, as it is a highly effective form of advocacy. Our comments facilitate the representation of underrepresented perspectives. Our Center frequently amplifies these stories and experiences beyond just the comment itself. Through commenting, we can have a direct impact on policy while educating policymakers about the issues that matter most. With our comments, we’re creating a public record and along the way, empowering more people to engage in the advocacy processes. Making these processes as accessible and inclusive as possible is part of the work we do.

Energized for the Journey Ahead

As we approach the new year, our resolve to champion equity only grows stronger. We’re excited to build on the momentum from the connections and knowledge gained this fall.

We invite you to join us in creating a more inclusive and just world – where disability, equity, and intersectionality are lived realities. Our work goes on, and we’re ready for the challenges and triumphs the new year will bring. 

Would you like to join our efforts in making a more inclusive world? The National Center for Disability, Equity, and Intersectionality has a broad range of groups for you to join- from our Community of Practice to short-term committees that are focused on specific issues and topics. If interested, please feel free to reach out to Leah Smith @ Leah.Smith@cchmc.org