Tag Archives: inclusion

Accessibility and Inclusion, Thoughts

Accessibility has always needed to be part of DEIA, and we shouldn’t change that now

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Disability and other identities are intrinsically linked together, and the disability community has long called for DEI to include disability. Anyone can become disabled at any time, and identity can impact access to, and likelihood of, various diagnoses. Unfortunately, disability is often used as a bogeyman, or a way of gatekeeping access. For example, some states have regulations that “create barriers to gender affirming care for autistic people and people with mental health disabilities” (Autism Self Advocacy Network, 3/22/23). Conversely, there are efforts to limit accessibility to only include some disabled people. For example, a key argument of an ongoing court cases attacking section 504 of the Rehabilitation Act of 1973 (Texas v. Becerra) is that gender dysphoria cannot be validly included under the definition of disability (Mother Jones, 10/15/24). And although the disability community has always included people of color, trans and LGBTQ people, it has not always fully welcomed them.

To unpack this, it helps to understand what “counts” as disability. Disability is defined quite broadly in relevant federal laws (Section 504 and the ADA), as anything that “substantially limits a person’s ability to perform major life activities,” has a “record of such impairment“, or is “regarded as having such an impairment.1” However, ableism, bias and politics may influence access to this status. For example, many organizations require diagnosis to provide accommodations, and this process can exclude people more likely to encounter medical ableism2, lower income groups,3 or those who lack access to information about their disability rights4. An alternative (which I use in my work) is to trust disabled people to know whether and how they are disabled. This includes trans people, who may have gender dysphoria that is disabling.

Now there is a federal campaign against Diversity, Equity, Inclusion and Accessibility (DEIA)5 . This includes accessibility: The White House has stopped including sign language interpretation in press briefings and videos (National Association of the Deaf, 1/31/25) and taken away interpretation services from federal employees (The Daily Moth). It also includes DEI. An Office of Personnel Management (OPM) memo issued 2/5/25 argued against not only affirmative action, but also any “training or professional development.” The memo includes, for example, ERGs that promote “employee retention agendas.” The National Science Foundation (NSF) wrote to PIs that “All NSF grantees must [cease] all non-compliant activities… that [use] DEIA principles and frameworks.”

All NSF grantees must comply with these Executive Orders, and any other relevant Executive Orders issued, by ceasing all non-compliant grant and award activities. Executive Orders are posted at https://www.whitehouse.gov/presidential-actions/. In particular, this may include, but is not limited to conferences, trainings, workshops, considerations for staffing and participant selection, and any other grant activity that uses or promotes the use of DEIA principles and frameworks or violates Federal anti-discrimination laws. Please...

Yet this campaign is also trying to divide us. On the one hand, the campaign is aggressive to the point of being nonsensical. One recent example is the recent document purge at the Occupational Safety and Health Administration (OSHA), which includes documents that simply use words such as “diverse” no matter the context. A case in point is the recently deleted “OSHA Best Practices for Protecting EMS Responders During Treatment and Transport of Victims of Hazardous Substance Releases,”6 which mentions the “diverse conditions under which EMS responders could work.” This rollback in the name of DEIA is not only unrelated to DEIA, it puts workers at further risk of becoming disabled.

On the other hand, that same Feb 5th OPM memo retains some disability related protections, stating “agencies should not terminate or prohibit accessibility or disability-related accommodations, assistance, or other programs that are required by [law].” While this final statement is reassuring regarding basic access rights, it is also critical to recognize that, in the words of Audrey Lorde, “We do not live single issue lives.” This is behind a key principle of disability justice (Sins Invalid), which demands that “no body or mind can be left behind” and is committed to cross-disability and cross-movement solidarity.

I have had to navigate programs in which I was the only woman, and only disabled person that I knew, for much of my early career. I want to emphasize how valuable and essential such programs are. Had I not been invited to attend the very first symposium on women and computing in the 90s, which featured many amazing women in STEM as speakers, I would not be a researcher today — my mentors in college assumed that I would go to med school, without ever asking me. Yet the US government is removing any evidence of such role models from its halls and websites.7 It was with the help of disabled mentors as a new faculty member that I began to evolve and grow my disability identity. In my sign language learning, I have only been exposed to signs that describe my queer identity in queer-led spaces.

Despite recent events, it continues to be illegal both to violate laws that provide for disability accommodation, and to discriminate based on “race, color, religion, sex, or national origin.”8 To my mind, obeying the law means actively working not to discriminate, including learning about and trying to rectify unfair advantages where I observe them. The narrow definition of accessibility in the recent OPM memo only protects one thing (accommodations) for one group (disabled people). We must not comply “in advance,” but instead continue working together toward a fair and just world for all affected communities.

Photo credit: Disabled And Here

  1. This later statement also means that if a person is effectively using assistive technology for accommodation, they still qualify as disabled even if they can now perform relevant activities (since they have a “record” of impairment). ↩︎
  2. Janz, Heidi L. “Ableism: the undiagnosed malady afflicting medicine.” CMAJ 191.17 (2019): E478-E479.
    APA ↩︎
  3. N. J. Evans, E. M. Broido, K. R. Brown, and A. K. Wilke. Disability in Higher Education: A social justice approach. John Wiley & Sons, 2017. ↩︎
  4. J. Banks. Barriers and supports to postsecondary transition: Case studies of African American students with disabilities. Remedial and Special Education, 35(1):28–39, 2014. ↩︎
  5. AAPD has written a great explainer of the campaign and how it impacts disabled people. https://www.aapd.com/explaining-deia-recent-actions/ ↩︎
  6. Best Practices for Protecting EMS Responders during Treatment and Transport of Victims of Hazardous Substance Releases, Occupational Safety and Health Administration U.S. Department of Labor, OSHA 3370-11, 2009, available via the Wayback Machine (https://web.archive.org/web/20241128074409/https://www.osha.gov/sites/default/files/publications/OSHA3370-protecting-EMS-respondersSM.pdf). ↩︎
  7. The Women in STEM blog is working to rectify this: https://womeninstemus.blogspot.com/2025/02/us-women-in-stem-manifesto.html ↩︎
  8. Civil Rights Act (1964) https://www.archives.gov/milestone-documents/civil-rights-act ↩︎

Accessibility and Inclusion, Disability, Thoughts

The Value of a Disability Identity

I’ve been reflecting a lot recently on what it means to identify as disabled.

Disability is a social construct in many ways, and the social model of disability argues that structural problems (and social expectations) are a root cause of disability. I would argue also that disability is an individual identity. A disability identity something that has helped me make sense of multiple complicated and difficult situations (but I believe it is relevant even in a simpler situation, disability is not by any means a synonym for difficult). It can provide guidance for things such as self-advocacy, education planning, and the use of assistive technologies.

For example, a disability identity might give someone a way to think about the school or work environment in terms of how it can better meet their needs. Accessible technology is part of the solution, but so are modified exam formats that provide an equal footing in measuring knowledge; or the ability to rest when needed (and to have access to quiet, restful spaces). These and other similar choices can have a big impact on inclusion. Yet we still cannot count on administrators remembering this, and people with disabilities and their allies face many small battles all the time to ensure equity along these fronts. When someone says (as I have heard recently) ‘people should go home to sleep’ or ‘we’ll just test this child using the same method as other children so we can see where they stand’ they are advocating for equality rather than equity, for measuring impairment rather than disability.

A disability identity can also suggest the need for political action. This can include volunteer work, protest, advocacy, and more. It gives people permission to go beyond the status quo, to not accept a situation that excludes them or takes away their control or impacts their safety. Instead, they are empowered to ask why this is happening, and how it can change.

A disability identity can also be a guide in personal action. For example, when I was going up for tenure, I sat down with as many potential letter writers as I could to talk about a very important concept in disability: Disclosure. About half of the people I talked to were surprised we were having a conversation about this because they knew and understood that it was neither legal (in many circumstances) nor appropriate (ever) to disclose my disability in any letter they wrote for me without my permission. About half were surprised that I brought the topic up, or even offended, because they had believed they would be helping me by writing about all that I had overcome on my way to tenure. To be clear, I asked all of them not to disclose, and that should always be the default, unless you have explicit permission to say something.

Relatedly, a disability identity highlights where and how we can improve smaller individual interactions by emphasizing the importance of respect and agency. As such, it suggests

  • The difference between being curious (an important way to understand the world) and questioning whether something is needed/laughing (even good-naturedly) about it (which can be invalidating)    
  • The value of checking in (asking how someone is doing, or if something is ok) rather than assuming (saying that “you seem fine today, that’s great”, for example) or avoiding (talking about someone rather than to them for example)    –
  • The importance of giving space. Sometimes it is better to let someone decide when to talk about things rather than pushing for information or constantly asking.   
  • The importance of trust. It is so important never to accuse someone of using their situation to get something they want. It is also important not to assume someone can’t do something just because they look a certain way or have a certain impairment.
  • The importance of acceptance . Letting someone navigate in their own way and not bombarding them with expectations and questions

A disability identity might also change how we approach a research project. In my class on accessibility this quarter, we have frequently asked the question: How would a disability identity change this project. The answer often lies in the questions we ask of a work. For example, we asked — How does this project increase the agency and control of the person it serves? Who does it include and exclude and in what ways? Were people with disabilities used in the project, or were they partners, or even leaders? Should they be authors of this paper? What happened to them after the project ended?

I want to highlight some differences between these questions and the ones immediately obvious from a social model perspective. That suggests questions such as: How does this work tear down structural barriers that they might be facing? Does this work question the status quo or hold it up? What is the context in which this work was done, and what happened after the project ended? These are also important questions, but they cover different ground.

What has fascinated me when talking about these issues with others is the level to which they can be confusing, confounding, confidence-chilling concepts for people without a disability. If you are uncertain what you can say to someone, or feel attacked when people ask for change, keep in mind that you might be missing important perspective, or that the work of educating others about disability might involve a broad brush that catches you up in it even if you are doing the right thing.

Finally, I’ll note that disability identity can also be empowering. If you have a disability, and have not thought of yourself in those terms, or considered those possibilities, it can be interesting to introspect about them. Ask yourself what a disability identity might give you. It does not need to define you, but it might still be part of you.