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Three Myths and Three Actions: “Accommodating” Disabled Students

February 29, 2024

Excerpted from the Winter 2024 Allen School DEIA newsletter article contributed by CREATE Ph.D. students Kelly Avery Mack and Ather Sharif, with Lucille Njoo.

Completing graduate school is difficult for any student, but it’s especially difficult when you’re trying to learn at an institution that isn’t built for you. Students with disabilities at UW face extra challenges every day because our university doesn’t support equitable participation in educational activities like research and mentorship – those of us who don’t fit the mold face an uphill struggle to make ourselves heard in an academic culture that values maximum efficiency over unique perspectives. In this article, we share three common myths about students with disabilities, reveal the reality of our inequitable experience as grad students at UW, and propose a few potential solutions to begin ameliorating this reality, both at our university and beyond.

Myth 1: DRS (Disabilities Resources for Students) handles all accessibility accommodations.

This is an incorrect expectation of the role DRS serves in a campus ecosystem. The term “accommodations,” in the first place, frames us as outcasts, implying that someone needs to “review” and “approve” of our “requests” to simply exist equitably; but given that this is the term folks are most familiar with, we’ll continue referring to them as “accommodations” for ease of communication. While DRS can provide some assistance, they are outrageously under-staffed, and UW research has demonstrated that they are only part of the ecosystem. Instructors need to consider accessibility when building their courses and when teaching their classes. Accessibility, like computer security, works best when it is considered from the beginning, but it’s not too late to start repairing inaccessible PDFs or lecture slides for a future quarter. UW DO-IT has a great resource for accessible teaching.

Myth 2: Making my materials accessible is all I have to do
for disabled students, right?

Disability is highly individual, and no matter how much an instructor prepares, a student might need further accommodations than what was prepared ahead of time. Listen to and believe disabled students when they discuss the accessibility barriers they face. Questioning their disability or using language that makes them doubt their self-worth is a hard no. Then, work with the student to decide on a solution moving forward, and remember that students are the number-one experts on their own accessibility needs.

Myth 3: Advising a student with a disability is the same as advising a student without a disability.

Disabled students have very different experiences of grad school, and they need advisors who are informed, aware, and proactive about those differences. If you are taking on a disabled student, the best ways to prepare yourself are:

Educate yourself about disability.

Disabled students are tired of explaining the same basic accessibility practices over and over again. Be willing to listen if your student wants to educate you more about their experience with disability, and recognize action items from the conversation that you can incorporate to improve your methods.

Expect that timelines might look different.

Disabled students deal with all kinds of barriers, from inaccessible technology to multiple-week hospital stays, so they may do things faster or slower than other students (as is true for any student). This does not mean they are not as productive or deserving of research positions. Disabled students produce high-quality research and award-winning papers, and their unique perspectives have the potential to strengthen every field, not just those related to disability studies. And they are able to do their best work when they have an advisor who recognizes their intellectual merit and right to be a part of the program.

Be prepared to be your student’s number-one ally.

Since DRS cannot fulfill all accessibility needs, you might need to figure out how to solve them yourselves. Can you find $200 in a grant to purchase an OCR tool to help make PDFs accessible for a blind student? (Yes, you can.) Can you advocate for them if their instructor isn’t meeting accessibility requests? (Yes, you can.) Not only will this help them do their best work, but it also sets an example for the other students in your lab and establishes an academic culture that values students of all abilities.

Alice Wong and Patty Berne: Two UW lectures moderated by CREATE researchers

Winter 2024 quarter kicked off with two outstanding conversations with women of color who are leaders in disability justice.

Alice Wong: Raising the visibility of disabled people

First, Alice Wong discussed topics important to her work in raising the visibility of disabled people. Wong’s book Year of the Tiger: An Activist’s Life was the topic of the Autumn 2023 CREATE Accessibility Seminar.

CREATE Director Jennifer Mankoff started the conversation asking Wong about her experience as a disabled person in academia and what needs to change. Wong said her work in disability justice was inspired in part by the “incredible amount of emotion and physical labor to ask for equal access” in academic settings. She had to spend precious time, money and energy to gain the accommodations and access she needed to succeed. But she realized that as soon as she transitioned out, her efforts would be lost and the next student would have to start over to prove their need and request a new set of accommodations. Wong was doubtful that large academic institutions can support the goal of collective liberation. It’s the “dog-eat-dog world [of] academia where the competition is stiff and everyone is pushed to their limits to produce and be valuable.” She encouraged instructors to incorporate books about disability justice in their syllabi (see the reading list below). 

Wong, who spoke with a text-to-voice tool and added emphasis with her facial expressions on the screen, also addressed the value and the limitations of assistive technology. She noted that the text-to-speech app she uses does not convey her personality. She also discussed how ableism appears in activist discourse.

One of her examples was a debate over gig economy delivery services, which are enormously important for many people with disabilities and that also under-compensate delivery work. She noted that blaming disabled people for undermining efforts for better wages was not the solution; collective efforts to make corporations compensate workers is the solution. She also explained that hashtag activism, which has been disparaged in popular discourse, is a crucial method for disabled people to participate in social justice activism. And she discussed her outrage when, as she prepared to give a talk to a public health school, her own access needs were used to censor her. Throughout her talk, Wong returned again and again to the principles of disability justice, and encouraged attendees to engage in collective forms of change.

Wong’s responses embodied a key component of disability justice principles: citational practices that name fellow contributors to collective disability justice wisdom. Her long list of recommended reading for the audience inspired us to build our new RDT reading list. Wong referenced Patty Berne several times, calling Berne her introduction to disability justice.

Patty Berne on disability justice: Centering intersectionality and liberation

A week later, two CREATE Ph.D. students, Aashaka Desai and Aaleyah Lewis, moderated a conversation with Patty Berne. Berne, who identifies as a Japanese-Haitian queer disabled woman, co-founded Sins Invalid, a disability justice-based arts project focusing on disabled artists of color and queer and gender non-conforming artists with disabilities. Berne defined disability justice as advocating for each other, understanding access needs, and normalizing those needs. On the topic of climate justice, she noted that state-sponsored disaster planning often overlooks the needs of people with motor impairments or life-sustaining medical equipment. This is where intersectional communities do, and should, take care of each other when disaster strikes.

Berne addressed language justice within the disability community, noting that “we don’t ‘language’ like able-bodied people.” For example, the use of ventilators and augmented speech technology change the cadence of speech. Berne wants to normalize access needs for a more inclusive experience of everyday life. Watch the full conversation on YouTube.

Recommended Reading: Parenting with a Disability

October 16, 2023

Two recent publications address unnecessary challenges faced by parents with disabilities and how those challenges are made extraordinary by a legal system that is not protecting parents or their children.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children

The National Council on Disability report finds that roughly 4 million parents in the U.S. who are disabled (about 6% of parents) are the only distinct community that must struggle to retain custody of their children. 

While we have moved (somewhat) beyond the blatant eugenics of the 20th century, some of those tactics persist. Further, “parents with disabilities are the only distinct community of Americans who must struggle to retain custody of their children.” This is also connected to other intersectional factors. For example, “Because children from African American and Native American families are more likely to be poor, they are more likely to be exposed to mandated reporters as they turn to the public social service system for support in times of need…”

Research has shown that exposure bias is evident at each decision point in the child welfare system.

Under the Watchful Eye of All: Disabled Parents and the Family Policing System’s Web of Surveillance

Author Robyn Powel details how the child welfare system employs extensive surveillance that disproportionately targets marginalized families. Yet centers for independent living and other existing programs have the potential to support these parents. Instead, “The child welfare system, more accurately referred to as the family policing system, employs extensive surveillance that disproportionately targets marginalized families, subjecting them to relentless oversight.”

One particular story in that article highlights the role of technology in this ‘policing’: “…just as the Hackneys were preparing to bring [their 8 month old] home, the Allegheny County DHS [alleged] negligence due to [the parents’] disabilities… More than a year later, their toddler remains in the foster care system, an excruciating separation for the Hackneys. The couple is left questioning whether DHS’ use of a predictive artificial intelligence (“AI”) tool unfairly targeted them based on their disabilities.”

As technologists, we wonder whether this AI tool was tested for racial or disability bias. It is essential that the technologies we create are equitable before they are deployed. 

Research at the Intersection of Race, Disability and Accessibility

October 13, 2023

What are the opportunities for research to engage the intersection of race and disability?

What is the value of considering how constructs of race and disability work alongside each other within accessibility research studies?

Two CREATE Ph.D. students have explored these questions and found little focus on this intersection within accessibility research. In their paper, Working at the Intersection of Race, Disability and Accessibility (PDF), they observe that we’re missing out on the full nuance of marginalized and “otherized” groups. 

The Allen School Ph.D. students, Aashaka Desai and Aaleyah Lewis, and collaborators will present their findings at the ASSETS 2023 conference on Tuesday, October 24.

Spurred by the conversation at the Race, Disability & Technology research seminar earlier in the year, members of the team realized they lacked a framework for thinking about work at this intersection. In response, they assembled a larger team to conduct an analysis of existing work and research with accessibility research.

The resulting paper presents a review of considerations for engaging with race and disability in the research and education process. It offers analyses of exemplary papers, highlights opportunities for intersectional engagement, and presents a framework to explore race and disability research. Case studies exemplify engagement at this intersection throughout the course of research, in designs of socio-technical systems, and in education. 

   Case studies

  • Representation in image descriptions: How to describe appearance, factoring preferences for self-descriptions of identity, concerns around misrepresentation by others, interest in knowing others’ appearance, and guidance for AI-generated image descriptions.
  • Experiences of immigrants with disabilities: Cultural barriers that include cultural disconnects and levels of stigma about disability between refugees and host countries compound language barriers.
  • Designing for intersectional, interdependent accessibility: How access practices as well as cultural and racial practices influence every stage of research design, method, and dissemination, in the context of work with communities of translators.
Composite image of the six authors of a variety of backgrounds: Christina Harringon, Aashaka Desai, Aaleyah Lewis, Sanika Moharana, Anned Spencer Ross, and Jennifer Mankoff
Authors, left to right: Christina Harringon, Aashaka Desai, Aaleyah Lewis, Sanika Moharana, Anne Spencer Ross, and Jennifer Mankoff

Authors

CREATE’s Response to Proposed Update to Section 504 for Medical, Health

Updated November 30, 2023

The U.S. Department of Health and Human Services’ (HHS) Office for Civil Rights published a proposed update to the HHS regulations implementing Section 504 of the Rehabilitation Act of 1973, which prohibits disability discrimination by recipients of federal funding.

This is the first comprehensive update to the regulations since they were first put in place more than 40 years ago. The proposed rule includes new requirements prohibiting discrimination in the areas of:

  • Medical treatment
  • The use of value assessments
  • Web, mobile, and kiosk accessibility
  • Requirements for accessible medical equipment, so that persons with disabilities have an opportunity to participate in or benefit from health care programs and activities that is equal to the opportunity afforded others.

Note that CREATE also provided a review guide and CREATE’s response in an accessible and tagged PDF document (53 pages) for a previous public comment invitation, specifically for the U.S. Department of Justice in the areas of digital accessibility.

CREATE’s Response to Proposed Digital Accessibility Guidelines

October 4, 2023

CREATE has submitted a response, in collaboration with colleagues within the UW and at peer institutions, to the U.S. Department of Justice (DoJ) proposal for new digital accessibility guidelines for entities that receive federal funds (schools, universities, agencies, etc.). The DoJ proposal invited review of the proposed guidelines.

The response commends the Department of Justice for addressing the issue of inaccessible websites and mobile apps for Title II entities through the approach proposed through the Notice of Proposed Rulemaking (NPRM). The future popularity of websites and apps was not anticipated when the Americans with Disabilities Act was signed into law in 1990. Since then, websites, non-web documents, mobile apps, and other software have become popular ways for Title II entities to reach out and inform the public, to offer benefits and activities, and to use as a part of their offerings to members of the public. In recent years, many entities have asked for clearer legal guidance, so we appreciate the Department’s efforts to address these issues in proposed rulemaking. 

Read more:

People with Disabilities are a Population with Health Disparities

September 29, 2023

In September 2023, the Director of the National Institute on Minority Health and Health Disparities announced the designation of people with disabilities as a population with health disparities. The designation is one of several steps National Institutes of Health (NIH) is taking to address health disparities faced by people with disabilities and ensure their representation in NIH research.

Dr. Eliseo J. Pérez-Stable, in consultation with Dr. Robert Otto Valdez, the Director of the Agency for Healthcare Research and Quality cited careful consideration of the National Advisory Council on Minority Health and Health Disparities final report, input from the disability community, and a review of the science and evidence.

As part of the effort to support research in this area, NIMHD also announced a funding opportunity to advance the science of disabilities research.

Read more

Your Review & Comments Wanted: Proposed Federal Accessibility Standards

August 11, 2023

A proposal for new digital accessibility guidelines for entities receiving federal funds was released for review by the U.S. Department of Justice (DOJ) on August 4, 2023.  Anyone affected by these guidelines has 60 days — through Tuesday, October 3, 2023 — to comment.

The DOJ is still trying to decide exactly what the rule should say, how quickly public entities should improve digital accessibility, and what exceptions to allow. For example, the current rule states that course content posted on a password-protected website (such as a learning management system (LMS) like Canvas) does not have to be made accessible until a student with a disability needs access to that content. If a student registers for the course, or transfers into it, then the course content has to be made fully accessible to all disabilities by the start of the term or within 5 days (if the term has already started). In addition, the course needs to stay accessible over time.

CREATE Director Jennifer Mankoff summarizes some of the most important aspects of the proposed rule in a Guide to Reviewing and Commenting that includes many of the the questions posed by the DOJ, with additional questions to consider from Mankoff. This guide is not meant to direct your comments, rather to facilitate and encourage your review. Whatever your viewpoint on the questions raised, the DOJ should hear from you. 

We strongly urge you to review the guidelines and submit your comments. If you have any questions, reach out to CREATE at create-contact@uw.edu.

International Disability Rights: Past, Present, & Future – A Must-See Public Lecture with Senator Floyd Morris

International Disability Rights: Past, Present, & Future
Public Lecture with Senator Floyd Morris

Wednesday, April 19, 2023, 2:30 p.m.
HUB 340
Free and open to the public

Floyd Morris, Ph.D., is the Director of the Centre for Disability Studies at the University of the West Indies, a current Member and Past President of the Senate of Jamaica – where he was also their first Blind member – and Special Rapporteur on Disability for the Caribbean Community (CARICOM). He has researched inclusion of persons with disabilities in several aspects of Jamaican life and published numerous books and articles.

Senator Floyd Morris, a black man wearing a grey suit and red tie, seated in front of the Jamaican flag.

Senator Morris is a member of the UN Committee on the Rights of Persons with Disabilities, which is the treaty body charged with the responsibility of overseeing the implementation and interpretation of the Convention on the Rights of Persons with Disabilities. 

Sponsored by the UW Center for Global Studies, UW Disability Studies, and Law, Societies, and Justice programs to welcome visiting lecturer Floyd Morris.

Honoring Judy Heumann’s outsized impact

Judy Heumann — disability activist and leader, presidential advisor to two administrations, polio survivor and quadriplegic — passed away on Saturday, March 4. Heumann’s family invited the community to honor her life at a memorial service and burial that is now available on video with ASL, captioning, and English interpretation of Yiddish included.

Who was Judy Heumann?

Judy Heumann fought for disabled rights and against segregation. She led the “longest nonviolent occupation of a federal building in American history,” according to the New York Times. When communications were cut off by the government, she passed messages to supporters using sign language and received support from the Black Panthers and the Mayor of San Francisco. The protest led to successful action on section 504 of the Rehabilitation Act.

Heumann did not stop there. According to President Biden, “Her courage and fierce advocacy resulted in the Rehabilitation Act, Individuals with Disabilities Education Act, and the Americans with Disabilities Act – landmark achievements that increased access to education, the workplace, housing, and more for people with disabilities.” Heumann talked in a 2020 article in Ability Magazine about the importance of “helping people to identify and understand the scope of disability that the ADA and other laws cover.” She believed in an expansive view of disability, and wanted to see more people included in the disability rights movement, stating “… I think it’s a combination of shame and fear that we may not be talking about if we have diabetes or epilepsy or cancer or anxiety or depression or bipolar or whatever. …I think expanding our circle is one of the big issues that we need to be dealing with over the next five to ten years.” Heumann went on to talk about the power of knowing that you have rights under the law, recognizing and fighting discrimination, and the importance of diversifying the disability movement by race, religion and sexual orientation: “We need to have an understanding, for example, of the fact that [disparities] may exist in various communities based on race and socio-economic status, how there are people within the U.S. who are not benefiting from laws because they don’t have the resources to hire an attorney or an advocate. The government, in my view, is not always enforcing laws as they should be.”

Heumann’s auto-biography, Being Heumann came out in 2020 (co-authored with Kristen Joiner). Crip Camp documents the 1970s birth of Heumann’s and other activists’ advocacy for people with disabilities. Ability Magazine inter-view touching on the ADA, the increasing diversity of the disability community, and the pandemic.

CREATE Co-director Jennifer Mankoff noted that, “Personally speaking, her influence on my career has been indirect but important. In my first years as a faculty member, at UC Berkeley, the Center for Independent Living (which Heumann founded and called “the first organization in the world to be run for and by the disabled” according to the NY Times) reached out to educate me about disability activism, through another leader, Scott Leubking. At the same time, I began to learn about disability studies work with the help of Berkeley’s nascent disability studies program and specifically academic and activist Devva Kasnitz. These early encounters directly influenced the direction of my research and advocacy and are visible today in CREATE’s emphasis on disability studies and disability justice and entwining them in its accessibility work.”

Learn more about Judy Heumann

Heumann’s auto-biography, Being Heumann: An Unrepentant Memoir of a Disability Rights Activist, published in 2020 and co-authored with Kristen Joiner. 
Crip Camp documents the 1970s birth of Heumann’s and other activists’ advocacy for people with disabilities.
Ability Magazine interview touching on the ADA, the increasing diversity of the disability community, and the pandemic.

CREATE Contributes to RFP on Healthcare Accessibility

The Agency for Healthcare Research and Quality (AHRQ) requested public comment about comprehensive, longitudinal, person-centered care planning for people with Multiple Chronic Conditions (MCC). CREATE contributed to a disability justice-focused response that highlights nine recommendations:

  1. Account for medical trauma.
  2. Meet basic standards for accessibility.
  3. Value individual and community knowledge about MCC.
  4. Treat accessibility as a first-class component of patient care.
  5. Prioritize community.
  6. Look beyond “care.”
  7. Remove financial barriers.
  8. Include people with MCC in planning.
  9. Enable people with MCC to enter clinical roles

Read the full response (PDF).

Increasing Data Equity Through Accessibility

Data equity can level the playing field for people with disabilities both in opening new employment opportunities and through access to information, while data inequity may amplify disability by disenfranchising people with disabilities.

In response to the U.S. Science and Technology Policy Office’s request for information (RFI) better supporting intra- and extra-governmental collaboration around the production and use of equitable data, CREATE Co-director, Jennifer Mankoff co-authored a position statement with Frank Elavsky, Carnegie Mellon University and Arvind Satyanarayan, MIT Visualization Group. The authors address the three questions most pertinent to the needs of disabled people.

They highlight the opportunity to expand upon the government’s use of accessible tools to produce accessible visualizations through broad-based worker training. “From the CDC to the Census Bureau, critical data that is highly important to all historically underrepresented peoples and should be available to underrepresented scholars and research institutions to access and use, must be accessible to fully include everyone.”

Reiterating “Nothing about us without us,” the statement notes that when authoring policies that involve data, access, and equitable technology, people with disabilities must be consulted. “Calls for information, involvement, and action should explicitly invite and encourage participation of those most affected.” In addition to process notes, the response addresses roles, education, laws, and tools.

Just having access to data is not enough, or just, when power, understanding and action are in the hands of government agents, computer scientists, business people and the many other stakeholders implementing data systems who do not themselves have disabilities.

The statement identifies access to the tools for producing accessible data, such as data visualizations, as low-hanging fruit and concludes with a call for funding of forward-thinking research that investigates structural and strategic limitations to equitable data access. More research is needed to investigate the ways that various cultural and socio-economic factors intersect with disability and access to technology.

Read the details in the full response on arxiv.org (PDF).

Richard Ladner named AAAS Fellow

Congratulations to CREATE Director for Education Richard Ladner on being named a Fellow of the American Association for the Advancement of Science (AAAS)! He is among 564 new fellows from around the world elected in 2021 for distinguished achievements in science and engineering.

Ladner was recognized for his advocacy and inclusion efforts for people with disabilities in computer science and related fields. His work has included development of numerous tools to perform specific tasks, including translating textbook figures into formats accessible to persons with disabilities, and enabling people to communicate via cell phones using American Sign Language.

Headshot of Richard Ladner. He has grey hair and beard and is wearing a blue shirt and colorful tie.

In addition to the AAAS fellowship, Ladner has been honored as a Guggenheim Fellow, a Fulbright Scholar, an Association for Computing Machinery Fellow and an IEEE Fellow.

Excerpted from the UW News article. See the AAAS announcement.

UW Disability Studies, D Center win UW Medicine CLIME Grant

UW faculty and staff affiliated with CREATE, UW Disability Studies and the UW D Center have received a grant from the Center for Leadership and Innovation in Medical Education (CLIME) to explore what it means to be an ally to people with disabilities. “This is an integral issue informing professional education in the medical fields as well as in design and engineering, says PI Heather Feldner. “I am most excited that this project has the potential to further the conversation about how an inclusive mindset can shape contemporary health professions education and practice. Accessibility and technology will be a big part of these conversations and the subsequent training material development. To be able to approach this project with the multidisciplinary perspectives of the CREATE team as a resource is a huge asset.”